By Suneeta Peres da Costa
L., my neighbour, lopes to yoga, her legs much longer than mine; even her husband who is tall says she is a fast walker. She can outpace me pushing a three-wheel pram. When we would walk for exercise last year, I would have liked to ask her to slow down but politeness or embarrassment got in the way.
I didn’t know at that time my body was full of disease and, as she streaks ahead now, it seems hard to believe that I ever felt such pain or awkwardness. I stop to admire the gardenias which are in full bloom on R. Street as L. chats amiably about their cat, a soot-black creature adopted from a shelter and who is known to slip out the front gate, right after her daughter who’s now a nimble two year-old.
When I got back from hospital, after the first admission and diagnosis, L. had sticky-taped a pink party balloon to my door, but as the weeks wore on and I couldn’t go to yoga or for a walk, could not move much at all – counting my steps from bed to kitchen to bathroom to sofa, with the occasional adventure to the letterbox, as victories – I found it odd she did not ask after me. Perhaps she had her hands full with her children… perhaps for a mother of young children, talk of severe reproductive illness was scary.
Admittedly, my five and a half hour surgery, in which my bladder, bowel, ovaries and uterus were to be untethered from the severe endometriosis adhesions that had ‘fixed’ my pelvis, was hardly a pleasant topic. There were risks and complications, like injury to the bladder or bowel, where the disease was quite involved. One surgeon told me if it was cancer, which was quite unlikely, it would be inoperable. I began to learn something about the relationship of pain and fear then, for I, who had hitherto been afraid of needles, would call up the hospital requesting to have my surgery brought forward.
Looking back, I was apt to be more demanding of others or disappointed in them because my expectations were heightened in proportion to the physical pain I was in. Despite years of excruciating periods which had had me bedridden, I could not now abide the pain which began grinding in my lower back as soon as I lay down and continued coursing through the night and for which I was downing Panadeine Forte and Endone every six hours. I cried and swore. The balloon was slowly shrinking in my front room and at one moment I got up to pop it with a paperclip.
As I had been told to stay close to the hospital, I suddenly longed to make long journeys, interstate, overseas. I thought wistfully of all the places I had not yet seen: Granada and Seville, Kyoto and the Himalayas. Invariably I found myself at Emergency in the middle of the night, tearful and clutching a wheat bag. I was not exaggerating when I said the pain was 8-9 on the pain Richter scale… After looking at my notes the nurses triaged me quickly and gave me more Endone. I was unable to hold my head up and rested it on my boyfriend’s shoulder. There was a bed shortage so we waited for hours. I’d wake up groggy to throw up in the bathroom or moan in the corridors. Eventually they transferred me to a ward only to send me home again.
At home, I felt for the first time how subjectively isolating chronic pain really is, not only because of the physical debilitation and exhaustion that accompanies it, or its unpredictability, but because of the conscious sense of constriction – the feeling of being bound by one’s own body, the very vehicle of mobility and extended perception. In The Body in Pain Elaine Scarry suggests that it is the very objectlesness of pain that distinguishes it from other feeling states: “Hearing and touch are objects outside the boundaries of the body as desire is desire for x, fear is fear of y, hunger is hunger for z; but pain is not ‘of’ or ‘for’ anything – it is itself alone”. She contends that pain may thus be imagination’s analogue, but hearing my own unhurried footsteps across the floorboards, I rather thought of Rilke’s ‘Panther’:
His vision, from the constantly passing bars,
has grown so weary that it cannot hold
anything else. It seems to him there are
a thousand bars; and behind the bars, no world…
In my case weariness had come after years of having my illness downplayed and disbelieved and pretending that all was well. I knew something was very wrong when, nine months earlier, I woke nauseous and vomiting almost every morning. I was bloated. A few people joked about pregnancy, but however much I might have wanted a child, I knew I was not pregnant. Indeed, I was bleeding profusely and once bled continuously, tissuey clotty bleeding, for up to thirty days. One evening, scanning my body at the end of a yoga class, I felt a profound sense of not just physical but mental unease and had to sit up again. I realised I could neither sit up nor lie down without discomfort.
If endometriosis has a metaphor in the social psyche, as Susan Sontag has persuasively argued illness does, it is its invisibility which renders its subjects simultaneously voiceless. Like Cassandra’s, my own warnings were not heeded and now I did not know whom to blame: my complacent GP of many years who did not order the necessary tests, the well-known Sydney gynaecologist who brushed off my symptoms and told me to try for a spontaneous conception, or the HR officer who told me I would have no choice but to resign or be medically rehabilitated. When an older male GP I visited tried it on with me while giving me a Maxolon injection for nausea, I very nearly thumped him.
I was angry and if I was hysterical, it was in the Hippocratic sense. Of course, I was not the first woman who had done injury to herself, internalising others’ ignorance. At least 1 in every 10 women suffers endometriosis, that is approximately 176 million women worldwide; of those, 1 in every 10 is unlucky to get to stage 4-5, as I had. Yet despite being so widespread, the reality one uncovers in article upon article and blog after a blog is of non-diagnosis despite terribly burdensome symptomology. I have heard first hand of women undergoing emergency hysterectomies following years of medical neglect and negligence – and this among women of the educated, developed middle class. If it were a disease that affected men, crippling their productivity, wellbeing and fertility, with the attendant financial and psychological costs, in the prime of their lives, would there be so much silence?
My parents had divorced a few years earlier and the family was scattered in a way that felt newly traumatic. I felt sorry for myself, but I was also stoutly proud and independent. One day, a friend who was a clinical psychologist came to see me. She had been attentive to me ever since the diagnosis, turning up to the hospital with organic tomatoes from the community garden she ran, peanut M&Ms and a stack of Delicious magazines. Now she brought chia and wanted to fuss over me, folding my clothes and doing my dishes for me – an act I found too intimate, laying bare, I felt, my helplessness. I alluded to the lives that had been devastated in the Nepalese earthquake; besides her own father was very sick, I pointed out – but she levelled with me: pain was not relative – it is only ever subjective.
It was through others’ loving kindness that I found courage and nourishment, however much actual eating and digestion remained difficult. Perhaps it is compassion then – imagination of others’ suffering and they of our own – that redeems our pain beyond our capacity to accept it ourselves. I reunited with a very dear school teacher who visited me with treats of her delicious company, gluten free baking and books. One friend showed me extraordinary compassion. He had lost his wife more than a year before, having cared for her through a long illness. Through the winter he came all the way down from the mountains where he lived, bearing gifts of sushi and cider. I read a lot at that time: Peter Mathiessen’s Nine-Headed Dragon River, Helen MacDonald’s beautiful memoir of taming the wilderness of her grief in H is for Hawk. I watched Hayao Miyazakis’ exquisite film, The Wind Rises, about dreams of flying and love, war and illness.
Lying on the sofa I made my awareness very moment-to-moment, not dwelling on who or what was not there, how the disease had begun (probably an incalculable algorithm of my DNA), progressed unawares or leaping ahead to possibilities of surgical calamity. I put on a recording of Arthur Rubenstein playing Chopin’s Nocturnes, a pain management technique that I had sworn by over the years. I talked to my bowel – as scientists have told us, the body’s other brain. For everything I ate and digested without pain – of which organic cavolo nero now formed a large proportion – I gave enormous thanks. I thought of women in places with no universal health care suffering and dying from this and other entirely treatable diseases. I could not board a flight, but one windy afternoon my boyfriend took me to walk the new labyrinth at Centennial Park.
In fact, I was incredibly lucky. Transections of two organs did not happen. I did not have to have a colostomy bag. The surgery was long and involving but it was all done in the end with a laparoscope. When I came to, my boyfriend was there, smiling. My parents were there, smiling too; perhaps the anaesthetic was playing tricks with my mind, but they were suddenly in the same space again although I had to be cut up for that to happen! My dear friend from the mountains came down for an hour’s visit, before going out into the Winter night again …
I had a stent in; I had haematuria but they told me I could leave. Eventually I would have an iron infusion. I would not miss the green cordial when it came round for morning tea, but I certainly would miss U. – the irrepressible Fijian Indian woman who sat in the bed diagonally opposite, quarrelling with her young carer. She suffered severe diabetes and one of her legs was amputated so she needed help to get out of bed and dress herself. Yet she managed to outwit a registrar who kept circling on her rounds. The morning I was to leave, this registrar arrived again and, shielding herself with a clipboard, forced the conversation: they had found something worrying in U’s biopsy. I wanted to conceal the flutter of my discharge papers.
When I hugged U. goodbye, she remarked on the Ganesha I wore around my neck – a talisman, among the first things I put on after surgery. She told me how, in the myth, Shiva and Parvati received some divine fruit which would give the one who ate it supreme knowledge and immortality. As both their sons, Ganesha and Kartikeya, wanted to partake of it, Shiva gave them a test: whoever would circle the world three times and return first to them would win the fruit. With his huge belly and slow moving mouse as a vehicle, Ganesha knew there was no way he could defeat Kartikeya who was a warrior and flew by peacock. He therefore contrived to circle his parents three times. When Shiva and Parvati asked him what he was doing, he told them they were his whole emotional universe and thus won the fruit. I remembered the labyrinth. I thought of the obstacles we put in our own way, as well as those the world gives us.
I lent against the car facing the sun, a stone’s throw from the maternity clinic where I had been born some thirty-eight years earlier. My boyfriend lifted my small suitcase into the boot; I had not needed it after all. Some of the surgeons in scrubs were taking a break on M. Road and some patients were actually smoking! I exhaled, watching my breath form fake curlicues. My body felt light, transparent. Traffic roared past, people passed on their way to work; the world did not seem all that different… I had heard of people undergoing radical personality changes following recovery from major illness but I was constitutionally cautious. In this sense, I had a lot to look forward to. For while I had prepared for being ill, I had not counted on the joy I would feel minute by minute, day by day in the months ahead as I experienced the end of a debilitation I had experienced for years, maybe a decade, before.
L. and I were at the neighbourhood centre now and going up the stairs to yoga. I wondered whether I could make it through an entire class, whether I would have the stamina. Yet as I began to move through the asanas, with their limber, creaturely Sanskrit epithets – the cat, the tiger, the dog, the cobra, the eagle – and other postures – the crescent moon, the mountain, the tree – I found my way with surprising, unconscious ease. I felt bound to the earth and my own sense of agency. The body might be harmed, might be diseased, but it may also heal and transform. It can be as purposeful and ingenious as a boat, a bow, a plough or wheel. Free from pain, the mind may delight in, and the imagination take flight into, the perceptual world of which it is surely a part: the tall grey gum, the cockatoos shrieking from the spire of the Presbyterian Church, the shallow quarter moon rising slowly in the Spring sky.
Suneeta Peres da Costa is an award-winning Australian writer of Goan heritage whose work includes the bestselling novel Homework (Bloomsbury). A former Fulbright scholar, her stories, poems and essays have appeared locally and overseas and her plays have been produced by the ABC. A novella, Saudade, is forthcoming from Giramondo.