The air. Can we talk about the air? The coagulation of smells. Other people, cleaning products, distant hot-plated food with no singular tang. The metallic, surgical dregs of something disappearing. Vomit. Inhale. Hand sanitiser. Breathe. Disinfectant. Exhale.
(Too much? The patient has not embellished.)
Michel Foucault writes in ‘The Birth of the Clinic’: ‘For classificatory medicine, presence in an organ is never absolutely necessary to define a disease.’ Without the X-ray, we do not see the hairline fracture, without the ultrasound we cannot witness the weeks-old foetus, without the MRI we miss the lesions. Doctors seek signs in the moons of nails and the whites of eyes. Illness and pain do not require a physical manifestation to be real.
The Uzbek anaesthetist in the women’s hospital asks pre-surgery questions, so I roll through my complicated medical history. In theatre, waiting for the spinal block to take hold, he talks about his country. It is ‘very corrupt’ and doctors get paid €200 a month. To prosper, they must take bribes, which he refused to do. I left because I do not think money and medicine mix.
This place of sutures, incision and surgery is called a theatre. No curtains of heavy velvet, but instead disposable blue or green. The stage is a table, a Greek ekkyklêma. Every player performs, except the passive patient. Lines to guide the surgeon are drawn on the body, a crude commedia dell’arte.
Hospitals are a dominion of streets and mapped lines. Their psychogeography filled up with each body that has passed through them. How many people have slept in this bed? A commonwealth of wards, a confederacy of the sick. Anyone who presents themself for care, cure or examination must accept the role of patient, which requires them to give up something: freedom/free will/free movement.
Hail the body’s own geography, what Foucault calls ‘the anatomical atlas’. Latitude tendons, longitude veins. The textured terrain: soft rind of skin, rope hair, sandpaper stubble.
Doctors replaced clergy as healers, but medicine and religion remain heavily intertwined in Ireland. Hospitals and wards bear saints’ names. Ethos and doctrine complicatedly bound up in the ‘Catholic country’ that failed Savita Halappanavar. How many lives lost, how much care withheld, because of religious intrusion on the realm of the body?
This may not be war, but there are two sides. The well and unwell; doctors and patients; staff and visitors. Susan Sontag wrote of the dual kingdoms of the well and the sick; one passport stamped, the other with the corners cut off. Illness gives us permission to drop everything – jobs, commitments, the tangle of repetition that is everyday life – but the price is high. Hospital requires a packed bag, but no ticket. Instead of yellow islands and turquoise shallows, there are rectangles of blankets, beds instead of sunloungers.
A patient is not a person.
A patient is a medicalised version of the self.
A patient is a hospitalised double of the body.
To become a patient is an act of transmutation, from well to sick, liberated citizen to confined inpatient.
There are hundreds of ways to break a leg; no two breast cancer diagnoses will have the same topography. My cancer is not your cancer; my fractures are not yours. Illness, despite its classification and language, is as unique to each patient as their fingerprints. It is not generic; it resists homogeneity. It is not solely about biology, but intersects with gender, politics, race, economics, class, sexuality and circumstances.
Questions/suggested opening gambit:
What’s wrong with you? Illness equals wrongness.
Where does it hurt? A request for specificity.
Do you have health insurance? Capitalist enquiry.
Is the doctor–patient exchange a dialogue, a conversation or an interrogation? It is an encounter in triplicate: verbal, tactile, textual. Text has legacy and permanence, unlike speech or touch. Our medical narrative is contained in the clipboard hanging on the end of the bed, or in the coloured cardboard folder. We repeat our story to multiple doctors and the file swells, in different handwriting, a collaborative piece of text, a diagnostic round robin.
Hospital truncates consciousness. Time operates on a different level. Meals appear randomly, outside the usual milestones of the day. Thought becomes cyclical waiting for the next administration of drugs, the next ward round, visiting hour. The clock crawls through the night; sound and light interrupt. Conversation is rare, reduced to a handful of haikus between temperature checks.
Infarction. Presentation. Pyrexic. I have learned their language, picked at the bones of their syntax. Marsupialisation. The most important part of such an interaction is not to listen, but to ask. GA or spinal? Because I have made frequent enquiries about my health using the medical words that belong to my history, it has been assumed by doctors that I am one of them. This has an implication of its own: that a patient’s motivation for being invested in his or her own health is transgressive. To be curious, or to possess such knowledge, is not your place. My assimilation of medical language – of inverting the act of questioning – has always been an attempt to assert autonomy; to hold on to a small part of my medical story.
Before pale blue tunics, nurses wore white dresses with upside-down watches. Starched hats with coloured bands that were a declaration of authority and hierarchy. Blue, green, red; but black for staff nurses. A funereal band as though in mourning. The hospital palette is infinite. Primary and pastel squares on the colour chart of urinalysis. Pink ketones, green proteins, beige bilirubin. In the phlebotomy clinic, lines of phallic test tubes with vaginal lids, hermaphrodite and colour-coded. White doors for electrical equipment, green emergency exits, biohazard symbols in bumblebee black and yellow. The red line on the floor that leads to the cardiac lab. An artery of red duct tape, the untaken brick road in Oz. Parts of the tape are missing, the broken line of a margin.
You are always far from the exits. But at least this is temporary: as a catheter, a paper stitch, the gypsum cast covering a bone.
The cardiac ward has blue curtains, pleated and dark. I try to find a word for its specific shade and settle on Yves Klein blue. His blue was an invention, and surprisingly recent, given the longevity of eternal blue things – sky, sea, eyes. The shade complements the pale gown the nurse has instructed me to wear. Put it on so that it opens to the front (pause) like a coat. Her voice is matter-of-fact, and professional, but there is kindness too, almost imperceptible. Patients are so attuned to these small gestures. They matter. In the last decade particularly, hospital protocol has undergone a perceptive shift towards empathy, including the introduction of the #HelloMyNameIs hashtag. To patient-centred care that recognises that a body in a bed is not just a diagnostic predicament or a hospital number, but an actual person with fears.
After two days I left the women’s hospital and went back to this piece. Life and writing had been briefly interrupted by the body going off course. Before I left, I took a photo from the hospital bed and a week later it appeared alongside these words on the wall of a gallery. The evening light made the bed sheets look like snow peaks, the blue curtain resembled a paint-ragged sky. As in any picture, there is no sound, none of the chaos that I know lurked beyond that curtain. It is an almost peaceful scene, recalling the kind of quiet only experienced at altitude. The composition and colour were an unexpected kind of calm, and in that moment, so rare in such a place, I had felt that it would all be OK.
The Moons of Motherhood
I
They arrive at night, my children. Pulsing into the dark, entering the world when the moon is up: a new moon on the day my son is born, a waxing crescent for my daughter. After that first night my daughter and I were apart, the second night is spent attempting to feed her. The US election results roll in and the blinking light of the wall-mounted TV keeps us company. Across the ocean, there is hope. States declare themselves blue and Barack Obama is about to be elected. In our small room, all I can do is stare at my new daughter. There is possibility in every molecule of her and tonight, in the world too.
> During long nights and noisy afternoons in the hospital, I start to learn things about her. She does not like the bath, she falls asleep easier than her brother did, and she eats very little at a time. Her small belly can only handle minuscule volumes and although her intake is consistent, in her first days, she nearly chokes. Before we are allowed to go home, a nurse insists that all babies must demonstrate that they can eat a certain amount. I explain her incremental appetite, that she was born early and in ICU, as the nurse forces the silicone teat of a bottle into her mouth.
The comma of her body uncurls, her skin darkens and she goes limp. The nurse whips her away, holds her upside down. With my daughter hanging bat-like, she thumps her back, shouting commands. I watch in horror, stuck to a chair. The sound of those slaps, her body turning purple, the feeling that after all we’ve both gone through for her to be here, she is slipping away. Sore, panicked, afraid to move, I am watching someone else’s life, not mine at all. It takes a minute – too many seconds – before she cries and I grab her back from the nurse. The baby and I are both upset, the nurse oblivious. ‘You can go home now.’ And a fear, familiar as night, creeps in. That the implicit trust we put in the medical world has been misplaced.
My hospital experiences have been good and bad, and childbirth is no different. Both births were medical and invasive, had more in common with surgical procedures than birthing pools and timed breathing. I had wanted natural deliveries, but my fused hips made it a dangerous consideration. They were no less births, and I did not feel any less of a mother. Only other people make you feel like that.
With second babies – even small, premature ones – staff assume that mothers have got this. That you are a matriarch pro who knows exactly what to do. Second-time mothers are deemed wise as monks. Yet I felt like I was starting all over again; that this child was my first, even though somewhere else in the city my sixteen-month-old son was dreaming his way through this moment. We were discharged that night, safer at home than in the din of the hectic maternity ward.
The memory of her suspended by one leg has never left me. My skin chills even now. It is imperative to replace this image with something else. Thetis holding Achilles above the River Styx. Maybe this act, this first encounter with trauma, has made her immortal, inviolable. She will be invincible, I think.
After my son was born, I had to inject myself with a syringe of heparin, an anticoagulant, for six weeks. Every day, between finger and thumb, I pinched the skin on my stomach, angled the needle and jabbed it in. It was best done quickly to alleviate the sting. Heparin is said to be ‘relatively’ safe post-pregnancy, in that due to its large molecules it does not cross over into breast milk. Hundreds of drugs have sluiced through my body, many of them highly toxic. It plays on my mind, the reason for my breast-feeding hesitation. I worry that putting anything into my body changes it, taints it. One possible side effect is HIT, or heparin-induced thrombocytopenia, a severe syndrome that can cause stroke or heart attack. In some cases there have been limb amputations. My caution does not feel misplaced but I cannot decide. I try talking to a nurse, who responds with a scold. ‘If you don’t, you’ll regret missing out on that bond.’ I had not anticipated this urge to undermine women right after they’d carried another person for nine months, expelling them in what can only be described as a gruelling act of attrition. Yet it is also easily criticised. You gave birth, but it wasn’t natural; you gave birth, but you had a spinal block; you gave birth and now you’re not breast-feeding? The casualness with which women are berated is never surprising. Our best efforts are not enough, and those unconnected to our lives can be so keen to remind us of it. Naturally this is done with that most passive aggressive of oratory tricks: faux concern.
Two days at home and I am back in the hospital with a womb infection. I have not been able to eat and the sonographer comments on how empty my stomach looks on the scan. I have to wear compression stockings, which require Herculean effort to roll on. They pinch and leave mesh marks. They and the heparin are keeping my blood in check. But with this new person in my arms, everything is about life. There is no room to think about death. One dark morning, my son is unsettled and memories of my illness return. There is my husband, parents and siblings, but only I gave birth to him. Before, when I was ill, and not a mother, it would only have been my body that would be gone. Now he is here, utterly dependent on me, and death would not be the isolated incident it once was. Dying would mean parting from this days-old person, and in those early weeks, when my sleep-addled brain races, I think about this. The horror of leaving this infant, whom I barely want to leave the room without. I start to imagine that if I died when my son was six months or one or two or three he would never know me. My husband would show him photos; I would make iPhone videos, or write letters to be opened at significant milestones. Every time I have a check-up, this feeling returns. Motherhood reinforces my mortality. I am not allowed to die, not while my children are small, or not ever. I cannot do that to them.
In the hospital after his birth, my mother held my burrito’d son and said to me: Now you’ll know.
That now I’d finally see what she meant.
About what?
That everything was leading up to this. That no responsibility in life was more important. That I would understand everything my parents had gone through.
Now you’ll never stop worrying. For the rest of your life, you’ll always worry about him.
It was a shared moment, a passing of a generational torch, but felt ominous. Was this parenthood? That every second of joy would be atomically split with fear? To bring a person into the world is to introduce them to all the fear and struggle, all the potential hurt and horror that can assail them. They will realise, one day, that they and everyone they love will die, so they must seek out good things: joy, people who make them laugh, songs. In those early days, I could soothe their sleeplessness with holding and rocking, but also by singing to them. Whispering choruses and rhymes into their ears, spreading notes across their skin.
We were in this together, each child and me. Inexperienced, feeling the way along some ancient passage. I waited for booby-traps, poisoned arrows, a giant boulder to flatten me. Just as there is a before and after with illness, so there is with children. During pregnancy, people gleefully shrieked: ‘Sleep now! You’ll never get a full night’s rest again!’ Often, these heralds were not parents, and yet they spoke with the same conviction, as if they’d paced the floor hundreds of nights with a wakeful child. The whole experience feels like being lost at sea. The uncertainty, the sleeplessness, the disorientation, a rhythm that is both steady and unpredictable.
You do not need this whole story. The story of each baby, growing, turning from newborn to toddler to child. You do not need nappies and bottle rinsing; or constipation and sugared water and figs, as the small balloon of his belly expands; or the knack of collapsing a buggy; night feeding and teething. That my son would never, ever nap, so I drove around aimlessly, hoping the engine would lull him; that he resisted a Moses basket as though it were a coffin. The flushed face drool of teething. The time I turned away for one second and my daughter rolled off the bed. The soft cotton of their little chests rising and falling, but checking in at night to see that they were still breathing. The paraphernalia and equipment, otherwise known as ‘the stuff’: high chairs and travel cots and sterilisers. All that plastic with padded corners. All that safety, and despite it the feeling that protection only goes so far.
In the first weeks, time bends, hides inside itself. Motherhood is living in that new sense of time. Being home with an infant is both static and non-stop. The days are long and short, endless and blurry, and yet there is always something to do, even when they nap. In a bubble, I don’t leave the house much, or sleep, because while my husband works, it is just me and the child, the child and me. It is our cave. The clock looms only to indicate feeds and naps. I never manage to get dressed even though I am a patchwork of baby vomit and milk stains. My stitches st
ing. The books – which everyone scoffs at but reads diligently – say that mothers intuitively know their babies’ language, that they learn what each cry means. It’s a short checklist: hungry, tired, wet or full of wind. The weather forecast of this newborn. Meteorologist is another role I take on; so is translator. Not sitting at the UN, headset on, but climbing the stairs and walking the rooms, cradling a child. Trying to decipher my son’s messages, what he is trying to communicate. Morse dots, baby cries. I try to interpret: why he arches his back, why he will not sleep, why he stares the bluest eyes into the green of mine. What are you thinking, Baba?
Knowing how to be a parent is not instant, and each of us grows up being parented to various degrees. The rules change, no two children are the same, and no one really knows what they’re doing. Parenthood is cumulative, a gathering of bits of information, bundles of sticks to build a house . . . (The whole world outside is the big bad wolf, to strain that metaphor.)
Although they are tiny pink flesh machines who sleep and expel fluids and cry, they are canny. I know he knows me, knows that we were crammed together for nine months, bodies touching. He knows that I am his mother. He follows my voice around a room, the way an animal responds to sounds in the night. He absorbs all around him, clocking these examples of how to be a human. While his mind is expanding, mine contracts. My brain feels as though it is constantly trying to sneak out a secret door in my skull.
Constellations Page 9