I’m so happy. 

On the other side of the grinding chronic pain, the sense of disconnection, the humiliating vulnerability, the crushing fear, the darkness that sucks me dry…  is a strong, buoyant joy. 

It’s not ‘keeping my head together’. It’s not employing strategies to manage my thoughts or feelings,  or keep perspective,  or look on the bright side, or support my own mental health in the ways we usually think of them. 

It’s the aftermath of honesty, the raw pouring of heart into some receptacle – journal, compassionate ear, hole in the ground beneath a tree. We don’t have to claw our way up after unburdening the unspeakable weights, we simply float. 

It’s the pushing back against all the stories I’ve been told, what I’ve been told I will feel and think and how this will unfold – and my growing bewilderment at trying to fit my experiences to powerful master narratives that partly match up and partly do not. It’s clearing some space to speak my own story and claim my own truths about my experience, finding in those tiny, personal details the richness of life, the personal and unique in a greater story of what it is to live and be human and try to bring a child into the world. There in those details is my life, is what makes my life my own among the experiences of billions of others. There is where my meaning is found.

It’s also the flying of a heart that’s been caged by chronic pain and found some relief. Yesterday my gum infection flared and set off bad pain my face. Combined with the exhaustion and pain of prelabour I was swamped. I have searched back for what used to help me during the bad years of severe fibro when I couldn’t walk or drive but was brain awake enough to need things to do so the restlessness, boredom, and relentless pain didn’t make me self destruct. One of these things was skilled work with my hands that required focus. I learned embroidery and needlework among  other small, skilled crafts. 

So I’ve taken up bead loom work again, and there in the quiet space of following my pattern and building my design, I find some peace. The building distress eases, the sense of guilt that I am failing to manage my pain, that I know better and should handle it better, the painful self consciousness that my shattered attention is increasing my perception of it, drowning me in it- all those are left behind and my mind becomes still as my hands create. It’s not even a tainted capital A ‘Art’ where I’ve been criticised too often and get swamped by insecurity and justifications for spending my time and money this way, it’s an untainted lower c ‘craft’. Stepping into it merely requires me to tolerate the scorn that it’s too traditionally feminine, that anything that isn’t ‘real art’ is a waste of my time, and that adjusting to impairment, disability, and pain will mean I never recover. That’s easier from a place of vulnerability. Capital A Art for me needs an altered space or a lot more self confidence. 

Rose heats me a wheat pack and I sit by the heater beading, and for the first time in hours I don’t feel tortured. The rocking calms, my broken focus stills like scattered birds coming home, my hands thread and sew tiny beads. My breathing steadies. 

That night I lay in the luxury of a hot bath with beautiful scented oil Rose bought for me, reading by the candlelight, and the trauma state washes out of me. I don’t feel small, helpless, broken, and afraid. I feel beautiful, loved, content, and at peace. We share a quiet evening together, watching DVDs, talking about our daughters. She does a breast pump, I eat soft fruit with the relish of the newly awakened – delighting in scent and flavour, senses alive. The night is soft and gentle around us. My joy is effusive and my mind feels clear. 

My heart is full to overflowing. I’m so in  love with my family, these beautiful women, my lovely home. Rose and I watch our littlest daughter rolling in my belly, powerful and vigorous. I’m excited to meet her, and I finally feel ready for her birth – ready to meet the challenges of it, ready to wait for it. I can endure the uncertainly and the transforming vulnerability of the in-between space of prelabour when I can so clearly see my little girl is okay. With that star to guide me, there’s time for wonder and even joy. The love in my heart bears fruit on the vine and bursts within me. Rose and I lay in the dark together and breathe each others air, skin warming to skin, dreams nesting beside us like cats. 

I’m so happy.

Drawing class – maize

Rose and I are both sick with a tummy flu, and serious case of the doldrums. Siiiiiiiigh. I’m finding being sick so depressing it’s hard to breathe. I’ve had a bad headache for three days now. Or one month, it’s all blurring in together with sinus infections and surgery. I saw an ENT at the hospital the other day, he’s happy with the surgery and said everything is healing well. He also said I shouldn’t still be having facial pain and should see a neurologist. He was a bit of a dismissive ass, to tell the truth. Everytime I hear about how people with mental illnesses would be so much better off if they were treated the same as people with physical illnesses, I kind of want to laugh, in a hysterical, jaded, painful, coughing-up-a-little-blood kind of way…

I don’t really know what to do with that. I know I have issues with chronic tooth infections, and I’ve had basically two years of sinus infection near constantly. I also have issues with TMJD, pain caused by muscle tightness in the jaw. And I’m nearly four weeks out of surgery. At this point, I think it’s pretty reasonable that I’m still in some pain, and if the surgery healing isn’t causing it, likely one of the diagnoses I already have is. Despite a letter from the jaw specialist, and me reminding every single person I saw about this op, including the damn surgeon himself in the actual theatre, the request to scope my left check while I was under and check if there was infection or just scar tissue showing on my xrays was ignored. So I’m going to have to go all the way back to my dentist again and try to figure out if my root canal has gone bad and infection is eating my jaw, or if nothing is wrong and we leave it alone… Bastards.

In Drawing class, which I think I’m still just possibly attending often enough to maybe pass, we were instructed to make many multi media images of a single item. I chose a dried cob of maize.






This last one is my favourite. I love inks. (They’re painted on white gesso)

Chronic pain

This is the chair where I’ve been living since Thursday. We go back a few years. I got it from eBay for $30 a number of years ago, and it’s been dragged through house moves and stashed during homelessness and followed me around all over Adelaide. A comfortable chair is desperately important when you have a chronic pain condition. Doubly so because with the fibromyalgia I have lost the ability to regulate my body temperature (this is common with many chronic conditions such as MS). This impacts me by causing deep pain in cold weather and heat stroke in warm weather. When I’m particularly unwell I move into heatstroke when the temperature is over 30, which happens an awful lot in South Australia. Many of the places I’ve stayed in only have air conditioning in the lounge, so if I want to stay out of hospital I have to sleep there through heatwaves. A comfortable chair that opens nearly flat is essential. I’ll still be horrendously unwell with fever, shakes, vomiting, weakness and so on, but under a wet sheet and if I can keep some fluids down it means managing at home which is generally much kinder to me.

I’m currently bunking in my chair because I have to sleep with my head elevated or the pressure in my sinuses gets intense and makes the pain worse, and I also have more problems with bleeding. It’s on its very last legs though, one arm has actually fallen off and is only held on by the fabric. It groans and creaks and is very difficult to put up or down… I’m half convinced that one night soon it will simply collapse under me and skewer me on terrifying springs and coils and inner workings…

I’m struggling to manage the post op pain. This morning when I found myself in tears despite ice packs and a slushie and ibuprofen, I relented and took 3 mg of codeine. It’s been enough to take the edge off and so far no hallucinations so my liver must be hanging in there.

I’m so aware of the veil of civilisation that buffers me from the anguish of my conditions. How fortunate I am to have a soft chair and a padded mattress and access to surgery and pain relief of sorts. Born into a poor country or an earlier time I would simply be a statistic, chronically ill, completely incapacitated by pain, finally killed by infection. Here and now, as deeply frustrated as I am by my limitations, I’m alive. I’m able to put some things between myself and agony, to stuff a wool lined chair and a box of antibiotics between me and the void. My life is full of relationships and books and art and using what I have to try and make the world a better place. I’m connected to my community, and I have a sense of the future. There’s so many other timelines where Sarah doesn’t make it this far. She kills herself at 10, or in a suicide pact at 19, or overwhelmed by intense dissociation, disability and loneliness at 23.
I’m still here at 31, trying to figure out how to be a good Mum with my disabilities, a loving partner, a loyal friend, an artist. My world has stopped completely while I’m so sick, I can’t manage my business or work on my assignments or visit my friends or clean my house. I live in this chair, blessed by visitors and the kindness of friends and family, utterly dependant and mostly helpless. But it is not meaningless. It is not about the limitations. I love and am loved. I’m touched by fire, kissed by darkness. Pain weaves itself through my life with the darkest of leaden threads and the brightest of red screams. I’ve also known ecstasy, wept with joy, been given gifts I can’t possibly repay, known the passion of laying with a woman who loves me, and the simple contentment of holding a child who feels safe in my arms. It’s been a full life, and I value it. Pain takes a lot away but it doesn’t take everything. It exists alongside quiet contemplation and the heights and the wilds and the little pleasures. It can be part of a deep experience of life.

Everybody’s tired, Dave

(Red Dwalf, anyone?) Rose is tired, lugging around a moon boot and crutches, I’m tired working a lot of hours and not getting enough down time, the weather is hot so even the pets and plants seem tired. We trekked off to have Rose’s ankle cat scanned today, a friend kindly came round and did our dishes as my birthday gift (I’ve been saving that coupon for awhile) we’re trying to figure out what we can do about the Christmas gift situation as Rose is broke and won’t be able to earn money until next year sometime when her foot starts cooperating again, and I bought some stone fruit from the local market, which was lunch.

Rose is currently trekking around the kitchen in her keenness to be useful and making dinner for tonight (roast) and soup for the next few days as it’s forecast to reach 40C here this week and during that weather I do not run the oven under any circumstances. I think she’s mad and keep trying to persuade her to put her moonboot back on (too hot and heavy) or use her crutches (hurting her underarms and really inconvenient) or let me help (…) but sometimes one just has to shut up and go blog instead of trying to be sensible.

We had a funny little moment a few days ago when the reality of weeks off work and needing help to do basic things like shower suddenly hit Rose like a bucket of cold water. She said to herself with some shock “Oh gawd, this means I’m going to have to be careful and think about everything I want to do in terms of how much energy it will take and how much pain it will cause!” I was driving at the time and just gripped the steering wheel a little tighter and smiled to myself. The penny dropped and she looked at me, we both laughed. I’ve had fibromyalgia, endometriosis and other chronic pain conditions for more than 10 years now. It’s rare for me to not be in pain already when I wake up in the morning and for pain not be present, significantly, when I go to bed at night. Sickness and exhaustion are common parts of my life.

There’s a cool little explanation going around the net called The Spoon Theory. Trying to explain chronic pain and fatigue to people who have not been sick is always difficult. This approach is great, although to me it has one obvious limitation – that is the assumption that all of life is about giving, or using up, energy. I’ve spent a lot of time around people who think like this and for me, it doesn’t work.

People are not finite supplies of internal resources that recharge overnight only to be spent again every day. We are parts of much greater wholes, members in complex ecosystems where energy flows in and out and between every part. Some things take almost every bit of energy I have available to do, and yet in spending it, I am recharged. Not just resting, but meeting crucial needs for closeness, meaning, belonging, love. My volunteer work costs me much energy and yet gives me so much back. Relationships can be exhausting but are also a source of deep joy. Being involved, living, learning to re-interprete pain and exhaustion not as cruel bad luck, but as the cost of being alive, a price I willingly pay to live a life that is deep, passionate, abundant, and vital. Learning how to go gently and get out of the boom-crash cycle of spending energy into the red and making yourself constantly sick is incredibly valuable. But beyond that, conservation becomes miserly. Pain is part of being alive. Spend your spoons wisely yes, but do spend them! Be part of things that give you spoons back.