Wild Sovereign Development Site

Tag: sickness

  • disembowelled

    For weeks after the diagnosis I was still having episodes of shock as deep as flashbacks, every single day. Every day at some point I went into a dazzled fugue of confusion and horror, while the same words whirled around me like three birds. I have cancer.

    Then the welter. Cancer? What? What do you mean, cancer? How could — No. That can’t be.

    Meanwhile I had been through a colonoscopy, and then an interior tattooing to guide the surgeon’s hand, I’d met with the surgeon who made breezy mention of maybe ‘whipping out the uterus’ in order to ‘have a look’ — been driven to hospital before dawn and woken up disembowelled. I woke up pegged out like a goatskin with six tubes leading into or out of me, and five holes in my sweet and private belly. I had not let that breezy surgeon get his knife into me, naturally: found a second, younger, doctor who did not say, ‘Don’t worry, I can do these in my sleep.’ I asked myself, which is going to cut me — in my sleep. The older white guy from an establishment family with photos of his kids in ski suits framed behind the desk? Or the young Asian Australian woman who’s had to work twice as hard to establish the same career. I had persevered when the referring doctor’s receptionists tried to shame me out of ‘wasting time’ with a second opinion and when one of them told me, it seems crazy to delay surgery at this point, I told her, round the knot in my throat, what seems crazy to me is: committing to this major surgery without getting a second opinion.

    This adventure turned out hilarious as well as just devastating. It felt overwhelming, colonizing, and grim. I did not lose myself. I told the gastroenterologist she ought to call herself “a colonoscopologist, cos it just has such great mouthfeel. It’s fun to say.” “It is!” she said, though her smile was wry.

    “And when you reach that point, which surely must arrive at some point in every day, where you find yourself climbing out the bathroom window at the back of the building going No more! I cannot stick anything else inside anyone else’s bottom! — why, then — you’re a colonescapologist.” In the hinterground of all these panda escapades the daily panic ran on and on. Ten minutes a day, utter annihilating shock: in which I woke up right back at the start like a terrible dream, unable to receive and to process the news. Meanwhile I had already been given an enema at six one morning, my first, and the nurse explained to me, very kindly as I lay naked on her table, “You must roll on your side and draw your knees up to your chest” and at the prospect of imminent anal penetration and the rapey feeling of being pierced against my will, thus losing this only form of virginity or intactitude or control remaining to me I started to shudder and shake and sob before I knew what I was doing, and I had to take hold of myself, as she was approaching with the implement. I told myself you need to really deeply relax and you only have a few seconds to do that — or this is gonna hurt.

    I somehow found the calm inside myself and took hold. I took a deep slow breath in and very slowly let it out and I did not turn away my mind, but paid attention where attention must be paid, breathing out slowly, letting it in. The nurse was gentle. I had told her my history, which came bubbling out in sheer terror as the moment of intrusion approached. Her name was Lisa and the other nurse was Lisa too and my gastroenterologist was called Leisa and they stood around me cheerfully as I began to cry and they all wore the same expression, it was a kind of puzzled helpfulness, and I wondered out loud, what is the collective noun for Lisas? My valour was in tatters but I flew it wide and high.

    After the ensuing procedure I woke up in a hospital, sporting my first and only tattoo. I’ve never pierced my ears and feel strongly protective of the body’s entirety. Three years are leaving that chaotic punker city I was finally a Berliner, sleekest of them all, submitting to this marking that was so far inside me no one ever would see it beyond the surgeon who would guide her blade by that mark, and then cut it out. “Make no mistake,” she said. “This is a very major operation. It’s going to take you some three months to recover.”

    10 days later, discharged from the hospital and sleeping in a friend’s bed while he slept on his foldout couch I was even still descending into the same panicked fugue at some point every afternoon. What, cancer? Who, me? Whaddaya mean… cancer. I had been into hospital, with the friend who drove all the way across town to pick me up at 5 in the morning, and sat with me until they checked me in, and then the surgeon greeted me at the theatre doors and they asked me would I get up and walk in, and I’d woken up in a beeping bed with five different tubes at various orifices some of them new coming out and going in, unable to move, too afraid to cough, with part of my bowel and one entire artery cut away forever. I finally had the caesarian scar I’d never found through childbirth of the baby who never came covered over close to my pubic bone, my belly was seeded with holes, one two three four five of them, one had a drainage tube spooling out to hang over the bed and the nurses came in to empty it. I learned all of their names, one of them the first night tried to drag me from my bed after I vomited violently right across the bed and I lay shivering with terror and pleading, please, it’s mostly water, I have eaten nothing in five days, can you just… mop me up a little and let me sleep, please don’t make me get up, I’ve just had surgery. This nurse said, “You’re going to have to pull your weight, my girl,” and I phoned my girlfriend and made her stay with me on the line by way of witness so nurse could not tug the painful umbilical line filled with yellowish and reddish fluid which after her too rough ministrations began to hang and the bandage holding it in filled up with blood, like a sac, and the stitch the surgeon had made to keep the drainage tube in place was nearly out. Even at this point, I was still reeling with the unreal, and though this news and its attendant traumas had progressed so very sharply that I had now left hospital and was creeping around my friend’s house learning to manage painkillers, a technology nearly entirely unfamiliar in my life — still at some point in every exhausted afternoon, panic descended with its highly focused sense of confusion and my mind flapped its big wings. Oh my god, I have — what? How can this be? In my own sweet and healthy body.

    On the last day in the hospital a kinder nurse arrived and told me, we are going to take that drain out now. She explained it does not end just under the skin, oh, no! of course, it goes clear down across my body to the bowel. I began to shake. And then — somehow, and I’ll never know how, at the end of everything, I found a strength that in my life I had never known. I who am unable to gouge a splinter of glass from my mother’s horned sole said, I will watch. And I decided to film it. And though I had to ask her to stop so I would not black out, after a few moments I could go on again, and let me tell you there is nothing on earth like the sensation of a thick tube being dragged out of one’s own body, it is a foreign object and feels so wrong and at the same time it resembles the feeling of a part of the self being dragged away, inch after inch, vomitous and painful. I watched and I listened and I asked her questions, and then it was gone.

    The collective noun for a Lisa is, it turns out, a decency. The decency of Lisas ensured that while I was under, which I had been so frightened for, there were only females in the room. Between the tattooing and the surgery I went back to painting class one last time. I made a self-portrait, in honour of my diagnosis. I told people. I published a story about it. People began to flock around the C-word, relieved and marveling. (There, but for her, go I!) I was carrying it for them and we could feel it. Every time somebody said, You got this, you are strong, what I wished they would say instead was, What do you need? I am thinking of you. Do you have someone to hug? How can I help?

  • the young man with a long way to go

    The young man in the place where we are staying is Moroccan and comes from the desert, which he describes to me as ‘sympa’, sympathetic, a kind place. As opposed to the hustle and throng of the medina where people greet us ‘welcome, welcome,’ and return smiles with great warmth and ease and employ the most genteelly probing sales techniques in (they say) the world.

    This young man is named ‘given by god,’ or ‘gifts of god,’ and we looked up his name in a list of the 99 names of Allah which, I only slowly realised as we were discussing these names with a nearby restauranteur, are perhaps not so much names as qualities. God the good, god the great, god the compassionate, god the wise. Similarly it dawns on me, belatedly, decades after the life on Java I so cherished as a child where we lived between three mosques and stayed indoors during the ferment of election week, that the prayers which play continuously in some hole-in-the-wall shops in the souk are not petitions, in the sense that I would understand prayers, in the sense I sometimes grope for in extremis and despair, longing in the depths of my pained heart to have someone to pray to; they seem perhaps more like resolves embedded in long and winding stories. And so they came upon a beautiful oasis. And there they could water their camels and have something to eat. And so god said to them…

    I am improvising, here. Who has any idea what god might be saying? not even the solemn Jehovahs Witnesses who came to my door with their beguiling brochures and then, when I grew just a little too interested, felt honour-bound to warn me away from the technicolor gloriosity of the illustrations. “This only… artist impression of heaven.”

    Ah – then. But god or, as I would put it, kindness, knowing, understanding, meaning, the connectivity of us with the world and with one another – a kind of exalted humanness, in fact – speaks to me in the trees and in the wind pouring through them; a sort of devotional prosperity I have dwelt in since childhood, when I used once to wander the markets in Jakarta and the coconut groves on the shore opposite Krakatau in a scintillated state of constant and ever-changing concentration.

    So, Gift of God has come to the city in the north, leaving his desert homelands behind, and he tells me he has been here in Fès only three months. He had a job in another pension but it was a bad place. He came to this house a week ago. Ah! I say, cupping his shoulder with my hand, from the side rather than from above because of the war between affection and a horror of condescension. Then you have been here only four days longer than us! Yes, he says, creasing his face in a serious, shy smile.

    This morning as I was lighting out across the courtyard with my books in my bag this young man approached me on his soft shoes. Would I like my breakfast now? I said, You know, thank you, but actually I think I might go into the adventure and just eat somewhere on the markets, today. Oh! he said, and dropped his head and an expression crossed his face that hurt me, as though I had hurt him.

    “It’s not because I don’t like the food! It’s just – I wake up and go, I’m in Morocco! And so I just have to go out and…” On the sunstricken square my lengthy sweetheart joined me where I was so deep in the book I was reading, a book about politics that I find difficult to understand, that when he crossed the sun and grasped me by the shoulder I started. Around us gentlemen of Morocco discussed – I imagine – politics, I imagine their talk is dry and knowing and cosmopolitan, world-weary, courteous, and wise, I hear words which are the names of countries and think, they are speaking of world events. The first morning I was almost too shy to sit down and had to approach the cafe, whose restful shelter I craved, by way of a huge loop up and around the street before I could cross the road at a tentative, oblique angle and ask the courtly waiter diffidently in my execrable French, excuse me? am I allowed to come in here? even as a female? I was the only woman in the cafe, almost the only woman in the square, and when I wanted to go downstairs to the bathroom they flew into a flurry of small-scale preparations and I was handed a door handle, by which to access the second stall – for women and for, I guess, tourists, as it has a Western toilet and sometimes even a roll of paper.

    The second morning I sat down in the blaring sun at a tiny table and was moved almost to tears when the man who had been sitting by me yesterday and whom I had greeted said, inclining his head, “Bonjour,” and even asked, “Ça va?”

    To have a courteous neighbour, who is reading the newspaper in Arabic and a battered paperback in English; to sit in the sun, after months in wintry Deutschland – it sends me down into a contentment that is very much like sleep.

    The young man in the pension, Gift of God, smiled his grave smile on our third night in Africa when we asked, where would be a good place to eat. He told us he had made a very small number of ‘connections’ in Fès, since he came here three months back alone, and his friend Mohammed runs a good place, very cheap, under the large tree which is a landmark as there are so few trees in the medina at all. “That young man has a long way to go,” says my companion as we cross the square. and for a few moments I am startled, before it clicks into place: that he will go far. We eat at his friend’s cafe, treated royally. We practice the gesture courteous Moroccans use, of a hand pressed level across the breastbone, touched to the heart, moved, thank you, I am sorry. Walking the medina I also use the fellow gesture which takes place a little lower, pressing across the tummy with my other hand, saying, “On a manger.” I hope this means, thank you, we have eaten, and use it to reply to the touts who hand laminated menus outside every restaurant (“We have wine!”) My German companion thinks the tummy is called the stummy, and recently revealed in conversation that to him this is because the stummy is the seat of all stamina. This makes sense. Stomach, stumina, stummy for short. Now I find out he is calling the guys who hawk the restaurants ‘shouts’, perhaps a better word than touts. Meanwhile in German, he says, I make ‘sweet’ childlike errors in a thicket, or fog, of laughably elaborate courtesy. Elaborate formality – to a German! that kingdom where a Keep Off the Grass sign will begin: Very honoured forest wanderers and forest wanderesses, please be advised…

    So on our first week in Fès we navigate our way with his terrible French and my awful French and the few paltry words of Arabic we have learned: principally ‘choukran’, thank you (hand across heart), and ‘la choukran,’ no, thank you, to which I’ve improvised a kind of Bollywood head-waggle of the hand.

    By the fourth night the influx of new sensations and sights have exhausted us and we go back a second time to the same restaurant. Mohammed greets us with cries of warmth and manifests a place to sit when almost every seat was full. He flaps the fancy tablecloth like a magician producing a bunny. I watch him do this over and over, I remember the rapid-fire thought processes and sly courtesies of hospitality work and comment, when he comes by to tip more bread into our basket, that it is like surfing. “Yes!” he says, jubilant, “exactly – like surfing.”

    This man has learnt all his English by listening to customers and he asks, what is the word in German for I will be awaiting you. Germans sometimes say to him, “Vielleicht später,” maybe later, when he offers a menu. We search among our words before lighting on Ich bin für Sie da, I am here for you, explaining this is “very gracious,” making gestures of graciousness like a king. “Ah!” he says, satisfied, Moroccan: “Ah! Yes! That – is most important.” He asks us to speak it into his phone so that he can learn it, and I take a photo of the two them with their sweet heads together, listening in on one departed French or Spanish or German tourist after another, speaking in all their different voices the phrases which comprise his vocubulary, each of them adding a drop to his store of hospitality.

    To my right, five Chinese students are spending the night with their phones. They are so absorbed that even when food arrives they ply their forks round it, scrolling onwards through the fascinating replacement world. A commotion of drums festers in the distance, around a corner in the narrow lane which is hung with handicrafts for sale. “Hand mad” says a sign above the racks of point-toed slippers. “Prix fixe.” I have seen tourists walking through the busy markets with expressionless faces shielded by devices set to continuously record, and I wonder how it must feel to be videoed a thousand times in a year by people who don’t seem to bother to even acknowledge one’s humanity. The students issue their drink orders (avocado juice, banana and orange juice, freshly pressed, with sugar and without) free from any thank yous or any please and Mohammed presses his palm across his heart as though it aches, saying in English, “Thank you, guys, I bring it right away, great, please, certainly.”

    The clatter of drums is coming nearer and I am craning to see past the French family who have stationed themselves in the passage to wait for a table. Two men, gaily dressed in such bright robes and complex festoonments my eye cannot grasp them, holding up their tiny drums, the skin of the drum painted with henna, stamping their soft leather boots and singing splendidly – I ask if I can take their photo and the taller says, “Foto!” and they both fall to attention, and then he puts his cupped hand out and I realise I have no coins. Mohammed is passing with a clutch of creamy avocado juices from the stall across the way. On his way back I put out my hand. “Est-ce que vous pouvoir me louer un peau de l’argent pour les musics?” This doesn’t exactly mean, Can you please lend me some silver to give to the musicians? but it’s the closest I can get.

    Sure, he says, without pause, digging in his pocket and showing me the coins. He selects for me and presses them into my palm: three, four dirham is plenty.

    At the end of the meal we want to pay and I say, “Plus the four dirham,” and Mohammed looks puzzled. “You lent it to me, for the musicians,” I say.

    “Ahh!” He shakes my hand, pressing his heart. “My friend.” “Thank you so much,” I say, “We love it here, we love your restaurant,” and behind us the French family jostles forward, scenting seats at last, and we say goodbye to the other Chinese students on our other side who have been telling us they woke up this morning in tents in the Sahara and could see the ‘galaxy’ but it was spoilt rather because there was ‘no service’.

    “You went on a self-catered tour?” I said.

    “No service,” the good-looking leader repeated, jabbing his finger at the sky. We walk away, tired in the stummy and thinking as we come home how extremely gentlemanly, how classy it is of Mohammed to have lent me the money for the buskers and then to have instantly forgotten the debt. Morocco seems to me so complex and inspired, I have the feeling of a rich, fine intricacy, am rejoiced to see how gently and tenderly anyone with a disability is handed up the stairs or into vehicles, I see the brutality, I feel my heart aching with the real inevitable charge of life that in ‘our kindergarten countries’ as my Berlin companion has called them this week is simply absent, or at least invisible, and when we are not afforded the luxe protection we experience as our right, we sometimes grumble at god, who has not given enough, whom we can call on with praise for sparing the floods our children, as though this were not an insult to the humanity of all the other children swept and drowned, as though the Acts of God excepted in the fine print of every insurance policy were not just and not our desserts, but rather an interruption to the service we expect, and for which we would pay nothing but our words.

  • of our elders

    I’m at my parents’ place spending some time with my dying father. He is frail as a leaf. This morning two Blue Care nurses turned up, funded by Australians’ taxes, and hauled him up the bed so hard they bashed his head against the headboard. When he is sleeping, which is much of the time, they sit with their hands folded. But today they tipped over from the useless to the dangerous.

    Two days back on July 11th we passed what would have been the 100th birthday of former Prime Minister Gough Whitlam, who died in 2014. As Tanya Plibersek put it, he was a warrior for fairness. I was saddened to learn when he died that this elder statesman had spent the last months of his life living alone in a tiny room in an aged care facility, separated from his wife of nearly seventy years, Margaret. That even such respected and influential people are not allowed to live together once they are old and infirm shows us how urgently we need more compassion and common sense in this field of endeavour. Why is aged care so brutal and so lonely when it ought to be tender, humorous, concerted, and peopled with small children and teenagers, kittens and dogs? Elders, children, Indigenous communities, people with disabilities, and asylum seekers all have deep sources of insight the middle ground of our society has lost. You would think we would cherish them kindly out of sheer self interest, if we genuinely can’t muster the compassion to care about their wellbeing.

  • to meet my father

    I’m going into the difficult embrace of family life to say goodbye to my father. Our family relationships have been fraught with miscommunications, outbreaks of insanity, and violence. Now it’s all coming to an end and we will have to, I hope, focus on our common humanity.

    My mother says, you’ll find him much changed.

    I’ve barely spoken to Dad since his cancer swelled and got into his bones. It has taken him over only slowly. The oncologist gives him so and so many months still to live. Meanwhile the effects of the stroke a decade ago slow his walking and, sometimes, his concentration and that makes it harder for his body to cope with the disease. What will kill him, it seems, is one in the string of pneumonias and influenzas that have infested him since he’s been in and out of hospital. An iatrogenic death: caused by the healer.

    Dad is so generous and has faithfully tried to be a good father to us. In recent years he has taught himself, probably at my brother’s prompting, to say, awkwardly, “I’m very proud of you.” On the rare occasions when I speak to him over the phone he says, every time, “I love you, pet.” He never used to say this. If I said, “I love you,” he would say, “I love me, too.”

    I find these feats of compassion to be particularly moving as his own father leapt from a bridge when Dad was only twelve. His brother was ten and their baby brother three weeks old. Sometimes people’s opportunities to learn parenting skills are so cruelly limited.

    On Saturday I will fly out to Frankfurt, and then to Bangkok. This was an innovation we cooked up because I need to turn up healthy and strong and not be one more member of an unwell household ailing and needing care. When I first flew to Berlin the thirty hours’ travel left me trembling and unable to rest, I was swimming uphill, underwater, and though I was sick with hunger trying to eat made me vomit.

    The thought of leaving Berlin as the hot weather finally unfolds, and of flying in to Brisbane where winter arrives in inverted commas, fatigues me more than I can say. I have just gotten settled and it’s taken me 18 months. I’m so slow to adapt. Parts of me stay behind, or perhaps travel by the old seaways. I have looked up the forecast for Brisbane and it’s planning to be blue, beautiful one day, perfect the next. Mum says, “There’s a cold front coming, in Tenterfield they’re predicting snow.” The weather channels show rows of cheerful whole suns, and temperatures similar to Berlin in the Spring. So I guess I’ll be wearing the same clobber I’ve been wearing these last sweeter months.

    In Berlin now Spanish tourists are beginning to cycle past in the street bare-chested. Girls come out in their fluttering dresses, like pennants; there’s a fashion for unpleasant prints. All the tattoos are on display and we’ve seen the first way too stoned person of the season, sitting on a bench under an invisible sack of cement, their eyes so round and so sore it looked as though someone had drawn in cartoon rings.

    My father’s muscle tone is so deteriorated he finds it difficult to swallow. He has to eat sitting forward, with supervision and great care. So I have chosen out for him all the disgusting comestibles he loves, in the softest forms possible: raw meats, and potted intimate organs, all the indelible edibles with which shelves in a German deli seem to me literally to groan. I’m going to make him builders’ marmalade for breakfast, which is Metz – raw pig mince – mashed with raw onion and served on bread. I’m going to tempt him with Sülze, a kind of jelly quivering with the flesh of a pig’s head and sundry choppings of gherkin and carrot.

    As well as the pulverised raw meats in glass I have a light jumper, four fresh new blank notebooks and a jar of ink, six books to read, and my sunglasses for crying in public places. I have all my old familiar fears and they’re heavier than anything. I have visions of our plane catching fire in the engine and plummeting out of the sky, extinguishing in the giant ocean, coming to rest in the plastic-loamed sand. I pray that an accident won’t happen. I pray Dad will be there when I get to the house, for there is no one now well enough to come pick me up, and I’m planning to call him and tell him so. It’s hard to say goodbye but it would feel even worse never to say it at all. To say: fare thee well and thank you. I will honour your name. I will never waste the kindness you showed. I have loved all the love.

  • happens so fast

    Mum’s in hospital. Dad’s in hospital. Both in the same hospital and admitted on the same night. He has pneumonia, we think, and they’re waiting for the results of the PSA test on his prostate cancer this morning. If he has a heart attack, he told the doctor, he does not want to be revived. My mother ten minutes after Dad was carted off in the ambulance went downstairs to water the garden, tripped over her own pants leg, and broke her hip. My brother was trying to tend to both of them while they were two beds apart on the emergency ward and when Mum was wheeled off for her Xray, and Dad was wheeled up to the ward, he asked as they passed the doors of the Xray department, can’t we just open the door a crack? And let them say hello to each other.

    The door was opened. They got to see each other and wish each other good luck. Dad’s doctor was doubtful he would make it through the night. Describing my parents saying hello through the Xray department door my brother broke down and sobbed. He kept saying, We need to talk about this as a family, we’re not ready to say goodbye yet! I said, this is very hard what you are doing. I wish I could be there to support you, and them. I’ve been tormented since I heard by the thought of them both being in such pain, and under the same roof, but separated. I said, even though it hurts us, I think it’s Dad’s own decision. It is his life and no one can keep him here if he is suffering. I described my friend who died last month, of euthanasia, when her quality of life became unbearable. Yes, said my brother very slowly. I know it might be very hard for you to do I said, and it’s asking a lot. But if you were able to find it in yourself – when Dad is awake and alert – to provide him with a calm enough conversational space so that he can clearly, plainly express his own wishes for his fate: I think it would be a truly loving service you could offer him. My brother said, I think he’ll want to hang on, for Mum. May 28th will be their fiftieth wedding anniversary. We’d imagined that I was the only one who wouldn’t be there, for that.

  • for you, now that you no longer need it

    My friend has died. She was very courageous and had cancer. She was a photographer, a maker of exquisite works. She was Dutch and chose euthanasia when the pain she was suffering became, after months, too unbearable. Now her partner is left alone to garden.

    She was wise and quiet in her mind, an insightful, shrewd, kind, passionate person. I just adored her. The world since I’ve known her has felt illuminated by her presence. The sense of her presence among us: you know, those so rare people.

    Tonight we are making a chicken curry very slowly and brewing up a panful of chai masala and my kitchen, where my friend and her partner once sat with me, smells of spices. My throat aches for her. I am crossing to the machinery in the next room to play Gurrumul Yunupingu’s song Bapa four times over; finally my companion without a word gets up and sets it to continuous loop. Thinking of the songwriter, who also could have died this week. Thinking on his experience in the Royal Darwin Hospital and of my friend, can she really be gone utterly, and of how we treat each other, can she really just – be gone, thinking of the Aboriginal belief that our soul goes into the soil, into the stones and trees, into the earth where we got born. Sometimes a mother rubs her newborn child in the red dirt, or in the ashes from the fire, to teach its soul – I think – where to come home to. It seems to me a woman who lived all her life in the one civil, intelligently run, beautiful city might be a beneficiary of this cool, loving, compassionate, scientifically realistic and empathic prophecy.

    The dead. Now we outnumber them for the first time it seems to me we must be particularly tender and respectful of the world they have left us, which their bodies have built, which their bones and blood constitute. I miss you, I miss you, I am crying out over the sink for you and you’re gone now and I miss you, I miss your company, your voice and your eyes, your dear creatureliness.