Sometime late morning it begins, a root of something that only as it grows do you recognise as pain. You have had coffee, as you do every morning, and now you feel the kind of heaviness that sends you to lie down. At home, the friend who is staying with you, whom you half invited and who may have misinterpreted your keenness for company, notes your early return and approves of your plan to retreat. For both of you it has been a year frantic with change and learning and emotion, and even if it is likely indulgent – so what, you’ve earned the right to call a morning off the books and instead take a heat pack and wish it were night all over again. She even microwaves the heat pack for you. You take it to bed where you think you will read or watch television or luxuriate in some way.
The feeling continues to grow, though, and turns from an elusive shadow in your abdomen into something more clawing, with a definite shape, even though you’ve never much liked admitting to physical pain, having been told stories of your grandfather walking into the doctor’s office on a broken foot, and having been praised by brothers for not crying when grazes brought blood to the surface. But it’s pain, this time, with a beat all its own, a pulse that echoes your heart. You find some Ibuprofen, take the recommended dose.
For a while this offers relief – until the fuzzy, muffled feeling is insufficient. The drug forms a thin sheet over the top of the pain, as when, noise-cancelling headphones on, two people seated next to you insist on having a noisy, unignorable conversation. You take another dose of Ibuprofen, and then, moments later, think to look up what this could be, this feeling that’s growing in intensity. By this time – grateful now that she was so keen to take you up on your offer of a place to stay that she didn’t quite notice the hint of reluctance in your voice – you’ve asked your friend and she’s told you that, yes, she can get the car and take you to the hospital. No, no, surely it can’t be that, you think for now, though the idea has occurred to you that it could be appendicitis; this feels, for some reason, vaguely pleasing, perhaps because it is an illness of the kind characters on television get. Perhaps, in your mind, this makes it more of an American disease, and the possibility that you have it means that perhaps you are now a little less foreign. This doesn’t make any kind of sense, but you are glad to have found something to be pleased by.
Perhaps, in your mind, this makes it more of an American disease, and the possibility that you have it means that perhaps you are now a little less foreign.
Five or six hours after the pain first rose to consciousness, with a diagnosis already in mind, you agree with your friend that it is time to seek medical help. You’re glad that a requirement of your visa is health insurance, though you don’t know how much it will cover. By this time you are having trouble standing. Friend by your side for support, you walk down to the street doubled over and then wait, leaning against a brick wall, sweating and hearing some kind of shimmery echo of something inside your head. Before your friend brings the car, the new surge of pain has made you vomit, right here on the pavement, in the street you have always felt was too fancy for you, outside the Venezuelan Embassy, which you somehow live next to. Someone emerges from the embassy as you keel over. She stops to help you, which is embarrassing. You suspect from her willingness to help, from her practical clothes, her youth, that she is an administrative worker, not some diplomat, and that as you hop into your friend’s car she will have to clean the sidewalk so it won’t look so undignified.
It is different, being admitted in this state, than it is arriving for a scheduled procedure – you’ve had a few scheduled procedures before, nothing serious, but there was an order to them. You don’t like not knowing what will happen. At the desk you are sweating and having trouble standing and you are answering their questions – accurately, you think – but you are really only half-hearing them because nothing about this sensation of pain is muffled anymore. It isn’t long before they give you a wheelchair, then take you through the doors that signify you are being taken seriously. You have made the right decision, not just because this pain makes you feel that everything but it is nulled, but because now there are no more decisions to make. They are someone else’s responsibility: you are an emergency.
You vomit again, and someone gives you a kidney-shaped vessel to hold in case you need to vomit a third time. They have been reluctant to give you painkillers until the tests are finished, in case surgery is required right away, and the painkillers make anaesthesia more complicated. Eventually, they do give you something, something stronger, because the machines they need are busy. A doctor asks questions, presses on your abdomen until you screech. This is when you first learn that it is unlikely to be appendicitis, because the appendix is on the other side of the body, though apparently it can ‘wander’. When the CT scan happens, they rule out appendicitis. Rather, there is a large mass sitting in your ovary, a part of your body that you, childless, don’t much think about.
Now they are happy enough to give you something to manage the pain while waiting for more tests. These are humiliating – you’ve had so little wrong with you until now that you don’t even know that for some things an internal ultrasound is required. For the first time, you open your legs, though you are not alert enough to look curiously at the screen at which the technician is carefully staring. But you note it when she shows you the mass – a thing about the size of a baseball that has been growing inside you, somehow, without you knowing it. As for the pain, there are two possible causes: the thing that is growing inside you might have started to rupture, or else the organ has torsed, and in flipping over itself has cut off its own blood supply. Ischemic, it may even have started dying.
The team that looks after this sort of thing is busy now. You’ve been here maybe seven hours and now it is midnight, but they want you to wait, to find out if there will be surgery tonight or not. Meanwhile they give you morphine and it’s the most wonderful, liquid sensation you can remember, pain being doused in its ooze like a candle snuffed out with honey. You sleep, on a cot in the corridor – there are no rooms available – and are ecstatic in the moments you wake to the light, the noise, for the feeling of no feeling.
Eventually they come and tell you to go home. This is confusing. How can you go home when they have done nothing but temporarily take the pain away? They tell you to schedule an immediate appointment with their clinic in the morning, and to take this script – Vicodin. Your friend takes you home again – imagine, she has waited all this time! – and you sleep until there is someone to call.
Once upon a time in Hanoi (this is how you think of it now), you had your palm read by a friend. She told you she had learned this skill from her mother, before her mother died. This fact, her mother’s death, made her diagnosis seem even more forceful. Your friend, heavily pregnant, spent something like ten hours a day by herself in the shop she ran on this street in the old quarter now full of hotels. You are not sure what wares this street traditionally sold. You came to her shop each day to drink tea with her and talk. When she reached for your palm you were curious – you’d always wanted to have your palm read.
You do not remember the things that most people care about – if she told you anything about love, marriage. Instead, you remember these words: ‘You will live a long time. Mostly in pain.’
What follows your visit to the emergency room is unpleasant. The clinic you’ve been told to call tells you that their first available appointment is in a month. You tell them that their own emergency department sent you and told you that you must have an appointment in the next week. You cry. You don’t know what to do. Eventually someone gives you a name of another clinic to try, and later you are glad for it, but for now you are angry. You’ve been sent home with nothing fixed, just a packet of opioids that could fetch quite a price on the streets. Still, you call the second clinic, make an appointment for a few days’ time, and then it is time to wait.
It is a week of being placid – for a few days, so deep into Vicodin, you have no idea what questions to ask. You have another ultrasound, two, three. The thing inside you has grown larger each time – and it hasn’t ruptured. Sometimes you don’t need the painkillers, then you do. In between the appointments you watch four seasons of Beverly Hills 90210.
The first gynaecological surgeon suggests you see a second surgeon at the same clinic – her books are fuller, but the surgery will be necessary, and she can do it with laparoscopy, which will make recovery easier. Before you can see her, though, you keel over again with the same pain, and the pills are gone, and so you end up back in the ER.
You remember these words: ‘You will live a long time. Mostly in pain.’
This time the hospital promises the surgery – promises that you won’t need to wait beyond the time when the team is finished with an ectopic pregnancy. You ask for the morphine, you tell them what you’ve learned. Again, you are on a cot in the hallway, but this time you are comfortable enough that you tell your friend to go home and get some sleep. At five am you’re woken and told you’re being discharged. You are confused and therefore compliant, and you gather the small number of things that you brought. You are aware that your friend will still be asleep, so you call a taxi to collect you. Later you’re told this wasn’t legal – the hospital should not have discharged you, with morphine still in your system, to any old cab driver – but you don’t know if this is true; you are aware in the moment that the cab driver is lying to you when he says there is a surcharge for being picked up at the hospital in addition to the surcharge for the ungodly hour, but you have no energy to argue the fact – you just hand over the notes, and feel a mixture of pity and contempt for someone who would rip you off when you are so clearly unwell.
You slide into bed until you’re awoken at 7:38 am by your phone. It is the hospital calling – they have only just realised you were discharged. It was an accident, this being sent home, but you’re really so close to asleep that you put on a brave voice, or a voice that means to convey leave me alone, because you still have morphine’s last honey trailing in your numb body, and though the doctor on the other end of the phone sounds like she doubts herself, she just lets it go rather than insisting on your returning (like many other emergency rooms, this one is too busy, doesn’t have enough beds; besides, you’ve got an appointment with another specialist, so why not let it go, and solve the next difficult case, get ahead of the curve), and having to face the fact that there has been a serious mistake somewhere, that someone could be in real trouble for this.
When you go to see the specialist again, he scolds you: the hospital should have called him the moment you were admitted. You should have called him. The specialist indicates that you should have had surgery already, you should have known what to do amid pain and drugs and foreignness. He is not really angry at you (he sees you are distressed) but is exasperated in the way you will come to be exasperated later, when bills arrive that seem excessive for help that was never given. Still, you feel defeated now, and later you will feel defeated again, but will write, nonetheless, at the urging of a psychiatrist who believes the hospital treated you badly. Years later, in conversation with another doctor, at another hospital, the head of something important, you will be told that if you had sent this letter to him, to his hospital, you would not just have had fees waived but would have been given $10,000, the kind of apology that signals a dread that something worse could have happened, and anyway, perhaps there is still some liability in the ordeal. You never know how to feel about the first hospital waiving its fees, the second hospital informing you that you would have had a claim. It is true that later you will become depressed for a time, will find the next semester of study and work incredibly difficult, will turn away from your peers, but will remain uneasy at the idea of compensation.
It happens that this all comes as your parents arrive to see you, having flown across the globe, and you show up at their hotel holding your stomach. The plans you initially had – to finally see cities you have longed to visit – is on hold as the question of surgery, recovery, comes. By the time they arrive there is not much waiting left: your mother piles into the taxi with you as you head to the clinic, meet the younger surgeon who will perform the procedure, have the thing growing in you measured again to confirm that, yes, it has once again grown. The new surgeon doesn’t scold. She is beyond this – discussing outcomes, risks.
You ask her, the first person who has seemed remotely warm, unhurried enough, unharried enough, to answer this question: ‘What would have happened to Anne of Green Gables, if she had had this illness?’ This question is a stand-in, of course, for all the women of the past. The real women suffered more, but you’ve read the fiction. You recall the heroine in Maria Edgeworth’s novel Belinda who fears she has breast cancer and alludes to the need for a mastectomy, 1801, no anaesthetic – the horror. She is wrong, she learns, and is glad, but you too have learned: that the remedy of cutting was always there. Now that you have felt the pain that made you vomit, you try to imagine how one could endure such a thing. Your surgeon says that women in the past would have endured nights of agony before it ceased. You imagine yourself standing outside the Venezuelan embassy not for three or four minutes, but for days, sweating and vomiting, unable to do anything but release anguish into air in the form of bile and howls.
Your surgeon-to-be tells you that if there has been torsion, part of the ovary might have died; that in cutting part of the wall the ovary will probably be removed. She tells you that with luck it will grow back, like the arm of a starfish growing back. You will come to think of this experience as submarine, as your jellyfish – the slimy, gelatinous thing that has lived inside you and stung.
The surgery itself is nothing. Not just the blank of anaesthesia, but also the blank of painkillers arriving, painkillers leaving, the blank of no food for however long, the blank of sleep in your own bed, then in a hospital bed, then once again in your own bed. The cyst is benign. There are photographs, too, new reports for later doctors – endometriomas, primarily, the thing that will allow the doctors at your Catholic university’s medical clinic to prescribe birth control – and then there is recovery. A process that seems meant to make you feel that none of this ever happened, though that is never quite what recovery does. Instead, recovery’s scars – four points in your stomach that the instruments penetrated, over years become pale pink dots not unlike mosquito bites – act as reminder that your body can betray you, can fail to do what it is meant to do, and that parts of it can die inside you.
‘You will live a long time. Mostly in pain.’
You were twenty-three when you heard these words. You dwell on them over and over again. These words echo not the mere pain of the so-called human condition, but something darker, more specific.
Whenever something painful has happened since you heard those words – almost half a lifetime ago as you write this – you have thought, at some point, ‘Maybe it has begun.’
It will happen again.
It will happen again when you are living in another American state, studying at another university. You experience the rising pain in the same manner and feel almost prepared for it. In the morning, Ibuprofen having done nothing, you go first to your friend to give her the biscuits you have made for the class and then to your teacher to explain calmly that you think you might miss class because you will need surgery. He says you do not – not because he doesn’t believe your pain, but because the idea causes him pain, and because your self-diagnosis is so unsettling, so specific. You go to the university’s medical clinic and over the hours in which they move you between doctors, nurses, rooms full of equipment, it will worsen in the same way – the way your memory cannot reproduce but can instantly recognise – and at last the clinic pays for a taxi to take you direct to Emergency. Friends meet you there. When you are under, you later hear, your teacher comes and waits to hear if the surgery was okay. He does not remain till you awake, but you understand he feels in some way guilty, worrying that his words, surely not, have been interpreted as a denial of seriousness.
Your friends collect you at five am, drive you across town to a pharmacy, take care of prescriptions and everything else. They bring you to a couch, kitted out as a sick bed, in their home, and offer you everything you need. Later, they take you home, and you wish you had bought a bed frame before now, rather than having to crawl onto a mattress on the floor. They do not want to leave you there, but you feel in this moment that not being any trouble means being invisible, and you sink into the floor and sleep a narcotic sleep.
Your pain threshold is tested. After your first surgery, you were diagnosed with endometriosis when the doctor sighted, and photographed, endometriomas. You mention this to the doctors who perform your second surgery. In a follow-up after the surgery, the doctor asks about your symptoms. The symptoms of endometriosis are usually variations on pain: painful periods, pain during sex, pain with bowel movements and urination; you are considered asymptomatic. Finding subjects with confirmed endometriosis and no significant pain symptoms is difficult. A study taking place at the university needs you. You are curious and agree.
The study involves pain. Each thumb is placed under a pressure valve; varying pressures are applied to induce pain. Twice, over the course of seventy-five minutes – first in an office, with your left thumb, and then in an MRI machine, with your right thumb – they crush your thumb in the middle of a nail bed, where it will do no lasting damage, at random intervals of severity. On a scale of one to twenty, you will report how much it has hurt you. Every time you have been asked to report on a pain scale in the past, the scale has been one to ten. This elongation of pain, the possibility of twenty, is unfathomable at first.
Each thumb is placed under a pressure valve; varying pressures are applied to induce pain.
With your left thumb, they produce a baseline. When they hurt your right thumb, they watch your brain. The fact that this study is not about thumbs, or about brains, but about endometriosis is what has drawn you – but after it is finished all you will talk of is thumbs and the MRI, which was louder than you had expected, and the fact that you agreed to be paid to endure this pain. The volume of the MRI is something you can almost fully relive, while, when you try to imagine the pain, especially the moments of nineteen, of twenty (which you reported with something like pride crushed), you can only imagine a kind of pressure that doesn’t hurt, one that just lingers over your nail bed the same way the weight of your cat lying on your stomach lingers on your stomach.
You look up the device they used. You land on an instrument called a dolorimeter. The word pain comes from the Latin poena, for penalty; it is a price paid, a punishment. Dolor, in English, means a great sadness; it arrived from the Latin via Old French, where it also meant pain. You think of the dolorimeter that was applied to your thumb: think that the thumb has been infected with grief.
The researchers conclude that you have a high pain threshold. This is what you tell future doctors, to let them know that whatever is happening internally, as yet unseen, may be more serious than they suspect from your demeanour. The doctors don’t believe you, even when you describe the dolorimeter, the MRI, the scale of one to twenty. When your calm demeanour crumbles it is not necessarily the fact of living in pain for however much longer, but the mental distress of dismissal.
It happens again when you are back in Australia. The first pangs come when you are staying in the mountains. In the evening you tell your friends that if the pain worsens you may need to go to hospital. That night the pain teeters, then backs off.
Home again from the mountains, you go to your regular doctor and she says, It’s not likely, seeming to ignore the way you’ve lived in your body, seeming to tell you that what is now familiar to you is a figment that fear has placed into your mind. But she sends for the tests, to set your mind at ease, and the next time you see her the first words she says are, You were right. It is the first time she has said this to you. That’s when you start thinking about finding a new doctor.
With your referral you get an appointment, a wait. The surgeon says things that you will only fully comprehend later. Such as, Why are you studying there, not hiding his scorn at your current endeavour, interpreting a return home as failure. Such as, You will need to get an ultrasound, while looking at the ultrasound, and then saying it must be done at another place, more expensive, slower. After you have returned with the new images, My first appointment is 15 January – a month away.
You tell him things he openly doubts: you tell him you have a high pain threshold. You tell him this has been tested. He smirks, as if this information is somehow cute. You tell him that if you are feeling like you do now, there has been torsion again. He will tell you this is not possible, that you would not be sitting so calmly opposite him if this were the case.
You have read the famous study ‘The Girl Who Cried Pain’ – perhaps only famous to you. You have read in its concluding notes that, ‘Women’s pain tends to be viewed as more emotionally based and thus less credible – or, likewise, less credible if indeed it is emotionally based.’ That where men are offered painkillers, women are more often offered sedatives.
You remember the moment in The Man Who Knew Too Much: Jimmy Stewart giving Doris Day a sedative before telling her that her child has been kidnapped. You remember her face that says this is unforgiveable.
You were not offered sedatives – instead were sent away with the strongest codeine and instructions to line your stomach with food. But you were scolded, and this is something you find hard to forgive. Probably because the research estimates only one in 100,000 women experiences ovarian torsion and the danger of ischemia it brings, you imagine your doctor doesn’t think of this as a likely worry; that, ironically, when you talk about pain in a coherent way, he thinks of it as emotionally based. That when, after surgery, he tells you of the torsion you had told him you knew was happening, he blamed you for not exhibiting more pain, more urgent pain – for only crying instead of, in that moment, once again vomiting in the agony that told him it was an emergency. He does not believe that you know your body well enough to know torsion, when it has happened before, because how could you know your body so well when you have unknowingly had this giant thing growing inside you for who knows how long? You did not tell him that you have always assumed you have some such thing growing inside you – because this is what you feared would be read as fatalistic, as emotionally based.
You feel that your female body is betraying you: you recall, of all things, an episode of the television show Grey’s Anatomy in which a woman undergoes surgery that removes the parts of her body that have betrayed the women in her family with cancers: breasts, ovaries, uterus. In planning the surgery, she meets with all kinds of pushback, people who question her judgment regarding her own body, her future. In turn, you think about Erin Brockovich, the moment when one of the Hinkley residents receives her diagnosis and she says to Erin, ‘You think if you’ve got no uterus, and no breasts, you’re still technically, a woman?’ You think about your missing parts, now they have removed the ovary, the fallopian tube, and wonder if you are a little less ‘female’, even as the other, female, afflictions – polycystic ovarian syndrome; endometriosis – remain.
It has begun.
The American writer Leslie Jamison once wrote, as if for you: ‘I find myself in a bind. I’m tired of female pain and also tired of people who are tired of it. I know the hurting woman is a cliché but I also know lots of women still hurt. I don’t like the proposition that female wounds have gotten old; I feel wounded by it.’ You dwell in her question, briefly, ‘How do we talk about these wounds without glamorising them?’
You used to glamorise the wounds. At five, you played Snow White after eating the poison apple. The image of her in a glass coffin, undead, her body wounded by a poison unleashed on her for being young, female, beautiful. Her glass coffin makes her a relic, like the saints you have seen, their corpses supposedly fresh for centuries.
Your brothers watched you playing at this story of female suffering. Concentrating on stillness, on feeling like death, you lay on the grass. They ran through the door to protect you. You were frustrated, near tears – you wanted to be left alone with your imagination of this romance of death and deathlessness and beauty.
Once you have been there, have vomited and screamed for dullness, there’s no glamour left in pain.
Yes, you are tired of this pain – it has a whack-a-mole quality now. A part of yourself has been removed, and so now another part pulls focus with a new ache. Or an absence in your body, now permanent, continues to shriek.
‘The Dolorimeter’ placed second in the 2020 Calibre Essay Prize.