Like Nina in my novel, I did think for a moment about the dying girl, how old she might be, how old you had to be to die. I felt sorry for her and I looked over at the nurse, to see if she was sorry too.
The truth is I never saw the child making a noise out there in the corridor, or the nurse who ought to have known better, who needed to learn to keep her voice down. I couldn’t turn my head to see.
The truth is the nurse beside me didn’t leap up to shut the door. She looked confused and then she blushed, as if caught out in a lie, a red tide rising up from her collar. She looked annoyed, like someone who had just been told they had to do overtime. She shuffled over to the door and flicked at it with her heel so that the handle almost caught but didn’t quite.
In the novel, the scene ends here, with Nina realising that the child they are discussing, the child who is dying, is her, but life, of course, is different. It carries on. No one yells, “CUT!” No one puts in a full stop and leaves the chapter neatly there.
So in real life the door swung open again, and I heard the unseen child and nurse proceed to discuss my imminent demise. When might it occur? Soon—tomorrow, the day after, some time this week, I learnt. Why was it happening? I was very ill. Why couldn’t the doctors make me better? My illness was too serious. Did that mean I was never going home? No, I was never going home. Was I going to Heaven? Yes, came the answer, in a didactic tone, because I had been a good girl and had taken all my medicine.
DAUGHTER
The present day
We are racing in a car through lush and verdant countryside, the roads hair-pinning around field boundaries, when I realise that my daughter’s life is in danger.
The landscape outside the car is that of a Renaissance painting: rolling green hills layering and repeating until they disappear into a blue haze. It is Palm Sunday. Earlier in the day, we went past a church and the people coming out of Mass were all clutching olive branches. The sun is so high in the sky that the trees and barns at the sides of the road stand in pools of their own shadow.
Some minutes earlier I crawled into the back of the car, the kit of emergency medication in my hands, and I am now holding my daughter as my husband drives, as fast as the car will go.
My daughter’s breathing is shallow, laboured, her lips distended, her skin patched and livid. The delicate features of her face are sunken, swollen, distorted. Her hands clutch mine but her eyes are rolling back in her head. I touch her cheek, I say her name. I say, stay awake, stay with us.
In moments like these, your thinking shrinks, sharpens, narrows. The world shutters up and you are reduced to a crystalline pinpoint, to a single purpose: to keep your child alive, to ensnare her in the world of the living, to hang on to her and never let go.
At the front of your mind will be the instructions and stages of the emergency medical plans that are taped to the inside of your kitchen cupboards. These have been pored, frowned, sometimes wept over. I have had them laminated, preserved. A tiny headshot of my daughter, younger than she is now, looking at the camera with an expression of amusement and trust, is glued to the top.
In everyday life, phrases and parentheses and names of drugs from these documents will float unbidden through my thoughts. If breathing becomes laboured, my mind will murmur to me, as I read a story to my youngest child. Auto-adrenalin injection, I will hear, as I stir the porridge on a school morning, or Call for backup. Stay with patient, I will find myself intoning, as I wait at a red light. At risk of a life-threatening allergic reaction.
Right now, as I sit in the car with her, the documents are clear, in their entirety, in my head. I can see them before me, the little green boxes, filled with plainly worded text, with phone numbers, with flow-charts, the confident arrows leading from one stage of suffering to another, from one circle of Hell to the next. I have them memorised, down pat, internalised. All those times when my mind whispered extracts at me were, I see, a rehearsal. A necessary bedding down of information for times like this. Now the green boxes are playing out in front of me.
—
Anaphylaxis: the condition was discovered in 1901 by a French doctor called Charles Richet, who was studying the effects of jellyfish venom on dogs. He initially thought that giving them a small dose of the venom would immunise them against future doses; in fact, with the second injections, the dogs developed breathing difficulties, then dramatically died. He is reported to have shouted, “C’est un phénomène nouveau, il faut le baptiser!”
He originally coined the word as “aphylaxis” from the Greek: the prefix “a-” meaning “without” and “-phylaxis,” “protection.” Without protection. He later added the extra letters to make it the more pronounceable “anaphylaxis.” The discovery won him a Nobel Prize.
The first documented case is said to be that of Menes, an Egyptian pharaoh, who died in 2641 BC after a sting from a hornet. Not such a phénomène nouveau after all. You can see the hieroglyphic panel, complete with lethal insect. I have pored over the depiction and cannot but imagine the scene: the darting pain of the sting, the rash up his neck, the swelling of limbs, of airways, the shortness of breath, the collapse. How long did it take for Menes to die? Did he know what was happening to him? Had he been stung before? I hope for his sake it wasn’t prolonged, that death came quickly. The horror of suffocating in your own body, the cruelty of your very life’s blood turning against you.
My daughter, like Menes, like Richet’s dogs, lives without protection. The first sign of anaphylactic shock is often hives, a reddened and raised rash around the mouth or down the limbs. The attack can sometimes be allayed at this point, with a dose of oral antihistamine, if luck is on your side, if the planets are aligned. But the lips, hands and eyes may swell, then the tongue. Breathing becomes restricted, noisy. And then you know you’re on dangerous ground, that the antihistamine hasn’t worked, hasn’t appeased the gods: you need a jolt to the system, you need adrenalin and you need it fast. The victim will be screaming at this point, clawing at their throat, hoarse with panic and fear. They may then go white and limp. They may lose consciousness. If untreated, as Menes would have been, cardiac arrest isn’t far behind.
On average, my daughter suffers allergic reactions, with varying degrees of severity, around twelve to fifteen times a year: I keep a detailed record. She was born with an immunology disorder, which means that her immune system underreacts to some things and overreacts to others. Whereas my other children might get a cold, she will be knocked sideways, requiring hospitalisation, a ventilator and a drip. If she encounters anything on the long list of things to which she is allergic, she may go into anaphylactic shock. This can happen if she eats something with a trace of a nut. Or if she sits at a table where someone has recently consumed sesame seeds. Or if an egg is cracked nearby. Or if she is stung by a bee or a wasp. If she touches the hand of someone who has been eating nuts or eggs or salad with pumpkin oil. If she enters a cloakroom and one of the coats has a peanut in its pocket. If she sits in a paddling pool with someone wearing sun-cream containing almond oil. If a café tells me there is no nut or egg in that biscuit, but they pick it up with tongs used earlier for a brownie. If someone across the train carriage or plane aisle opens the wrapping of an energy bar with nuts. If the person next to her at school has eaten muesli for breakfast.
I could go on.
We live, then, in a state of high alert. I have to know where she is and who she is with at all times. I enter a room and scan it like a SWAT team: What in here could pose a danger to her? The table surface, the door handles, the soft furnishings, that crumb-strewn plate? Her teachers and classroom assistants have to be trained in allergies, in medication, in resuscitation. I read and reread ingredient and allergy lists. I check and recheck with people wherever we go: are you sure, are you positive, are you certain, can you swear on your life that soup contains no nuts or seeds? Could it have been touched by a utensil recently used to stir nuts? Are you positive your hot chocolate has no powdered hazelnut? Can I plea
se see the packaging?
We never leave the house without her medication, her emergency kit. We know how to inject her, how to administer cardio-pulmonary resuscitation, how to recognise the signs of low blood pressure, respiratory distress, urticaria, the onset of cardiac failure.
I know I must nod calmly when people tell me they understand exactly how I feel because they have a gluten allergy, which makes them really bloated whenever they eat bread. I know to be patient and genial when I have to explain that, no, it’s not okay to bring that hummus into our house. No, it’s not a good idea to give her a little bit to get her used to it. No, please don’t open that near her. Yes, your lunch could kill my child.
I taught her brother, at the age of six, how to dial 999 and say into the receiver the sentence, “This is an emergency case of anaphylaxis.” Ana-fil-ax-iss: he used to practise the pronunciation, to make sure he’d got it right. My life with her involves a fair amount of sprinting along hospital corridors. The nurses in our local A and E department greet her by name. Her consultant allergist has told me several times that we should never take her outside the range of a good hospital.
—
Our problem, in the car in Italy, is that we don’t know where we are. We are lost. A friend, earlier in the day, invited us to her friends’ farm: there would be donkeys, she promised, and newborn goats, puppies, fresh cheeses, horses, pigs. I rapidly ran, as I always do, through an inventory of the risks involved in such an outing: minimal, surely. We won’t be eating anything, we’ll be outside in the fresh air and sunshine, I can give her a low dose of antihistamine, just in case. She adores animals, and what reason could there be to deprive her of this trip? Shouldn’t all children get the chance to pet some donkeys and handfeed a newborn goat?
We followed our friend’s car in ours, blindly, blithely, without glancing at a map. We have spent the morning at the farm, petting the goats, with their tiny, emerging horns, stroking the donkey, watching the tortoise toil stolidly through the long grass. When my daughter began to feel itchy and ill, we left, striking out into the countryside, heading in what we thought was the right direction.
Now she is beyond feeling ill. Now she is in danger, and now we are lost.
We have the vaguest sense that we are somewhere on the Lazio border, but there is no phone signal and our satnav, on the dashboard, is spooling in space. Life is slipping from my child with every passing second. Once you use the intramuscular adrenalin, you need immediately to call an ambulance. She needs a hospital: she needs a heart monitor, a dose of steroids, blood-pressure stabilising medication, a resuscitation suite, a doctor—several, in fact.
How can we call for help if we have no phone signal and no idea where we are?
I am going over her movements in my mind, wondering what on earth it could have been, where I went wrong, what I didn’t notice, what could possibly have slipped through my net of vigilance. Pollen from a nearby flowering nut tree, a trace of something on someone’s hand, something in the animal feed? Can she have inhaled some nut or seed dust from somewhere? What was it that I failed to see, failed to prevent, failed to notice?
My eyes meet my husband’s in the rear-view mirror. I try to communicate with him using no words, because I don’t want to alarm her or her siblings, but I am willing him to understand this: she is dying, like Menes, right here in my arms.
Her skin is bubbling and blistering, each breath a struggling symphony of whistles and wheezes. Her face, under the scarlet hives, under the grotesque swelling, is ghastly white.
I think: she cannot die, not now, not here. I think: how could I have let this happen?
—
There was once a girl who met a boy and his friend in the middle of a courtyard. The girl was cross about something that day (it doesn’t matter what), and as she talked to the boy and his friend, she kicked a wall with the toes of her boots. She wore big boots in those days, black ones that laced up round her ankles, and the shortest shorts the boy had ever seen.
The boy walked away, thinking he had never met anyone quite as frightening as that girl. The girl walked away, thinking the boy was very shy. Neither would have suspected that they would, many years later, fall in love and, eventually, marry.
Twelve years after the wall/boot incident, the boy and the girl—or, rather, the man and the woman—have a child. The baby has the woman’s eyes and the man’s peaked hairline; he is, they are both deeply and privately sure, the most beautiful baby ever born.
When the child starts to walk and talk, the woman thinks she might like another child. She becomes pregnant, but this baby dies before it even lives. She cries a lot, she hugs her child more tightly and tries to get pregnant again. She tries and waits and waits and tries but, for some reason, her body won’t do what it did before. It has shut down. It seems to have forgotten how to do it, how to pull off that particular trick.
She takes vitamins; she does yoga; she goes to a practitioner who sticks very fine needles into her flesh; she waits and waits. Each month, every twenty-eight days, feels like another failure, another baffling loss.
A doctor takes some blood tests. “There is no reason you can’t have another baby,” he tells the woman.
Someone scans her innards. “There is no reason,” they tell her, “you can’t have another baby.”
Then why, the woman wants to know, isn’t it happening?
They can’t tell her that. They shrug their shoulders, they turn away, they wash their hands. “If you stop thinking about it,” they say, “it will probably just happen.”
The woman stamps away across the car park. If there was a wall, she might have kicked it. This is, she decides, as she grinds her key into the ignition, her least favourite sentence in the English language.
“If you stop thinking about it,” she snarls, at the automated barrier as it lifts to let her out, “it will probably just happen.”
“If you stop thinking about it,” she snaps at the silent radio.
As she pulls up outside her son’s school, she is muttering, “It will just happen. Probably.” She eyes the group of mothers waiting at the gate. All of them have a child in the school, perhaps two, and a smaller child in a sling or buggy. Her son has recently stopped asking when he can have a baby sister or brother; this has not gone unnoticed by the woman. He did, however, only last week, ask if it was possible to play tig on your own.
She takes a deep breath, opens the car door, tosses back her hair, and steps out.
The problem is, of course, that she cannot think about anything else. She cannot not think about it. The desire, the need, the grief, the frustration of it is ever-present. It forms a constant undertow to everything she does. She wants a baby; she wants a sibling for her son; she wants the baby she lost; she wants any baby at all. It’s like wearing a pair of glasses she cannot take off.
The man and the woman go to a different doctor. This clinic has opaque windows; the waiting room is full of still-faced people; the air here is steeped with longing, with loss, with faint hope. No one in this place will ever ask her when she is going to get her skates on. No one here will say the words tick-tock, tick-tock.
On one visit, the woman takes her son with her and the other people in the waiting room look quickly at him—at his T-bar sandals and rolled-down socks, at his shoulder-blades under his shirt, at his fingers gripping the hand of his mother—and away, and the woman feels ashamed of her own sadness, when she has so much, when she has him. These women have been coming to this place for years and have nothing to show for it. Less than nothing.
The woman injects herself, has scans, allows her blood to be screened, lies back on beds while they search and delve with metal instruments.
When she gets the call to say it hasn’t worked, that the blood test has come back as negative, insufficient, that it’s all been for nothing, that the embryos haven’t taken, she is standing at the cheese counter in the supermarket.
Okay, she says into her phone, staring at the Cheddar, the c
reamy-sided Brie, the wedges of Parmesan. Okay, thank you, I understand. She hangs up without saying goodbye.
“Who was that?” Her son is gazing up at her, clutching a packet of his favourite triangle-shaped cheeses.
No one, she says. Nothing. It was no one.
—
It was a brand of magic. Of this I am certain.
I am not a mystical, superstitious person. I don’t believe in luck, in Fate, in any deity, karmic repercussions or divine retribution. I don’t cast spells.
Nevertheless, for weeks after that moment at the cheese counter, I persistently felt listless, tired, nauseated. I went to Skye, in a camper-van, where it rained and rained, not once in a while but every day, without let-up. I bled, on and on, more than seemed possible. I went into a chemist and heard myself asking, in a low mumble, for iron tablets and “sanity towels,” a mispronunciation that made me collapse into hysterical laughter. As I paid, I saw the lady behind the counter eyeing me with concern.
It rained horizontally; it rained vertically; it rained in swirls. I cried up mountains, on beaches, in woodlands, in the sea: wherever it was possible to cry without my son noticing. I swam in the fairy pools at Glenbrittle, zipping myself into my wetsuit and diving through the watery arches, resurfacing into air so cold it made my lungs hurt. There would, I decided, as I thrashed through those clear, chill waters, be no more fertility treatments, no more trying; there would be no more babies in our house.
I came home and cleared out the garage: all the baby blankets, Moses baskets, maternity clothes were packed off to the charity shops. I’d had a child, and I would have no more. It was finished, that chapter of my life. It was over, it was done, and I needed to come to terms with that.
I Am, I Am, I Am Page 15