You are desperate for people to see the person beyond the condition, for her to be viewed as more than just a collection of symptoms. Too often her eczema, her allergies, her sudden spikes of illness are seen as a synecdoche for her, for the child she is. You hear someone at the school gates refer to her as “the girl with the gloves” and you want to go to them and say, tell me what else about her you can see.
You want her to be recognised as a person, not just a medical phenomenon. You begin to hate the word “problem”: what she has aren’t “problems”; she herself isn’t a “problem” and neither is her presence in a room. You spend a long time compiling lists of acceptable words before settling on “challenge.” You try it out: my child has immunology challenges; she has dermatological challenges.
You pretend not to notice, not to care, when the height and weight charts tell you she hasn’t grown at all in the past year. You reel off positive synonyms for the word “small,” when she wonders why everyone in her class is taller than her: petite, you tell her, neat, compact, dainty, diminutive, perfect.
You will, for a while, expend some time and energy into finding out why this has happened. Why her? Some theories put to you by various practitioners include: the amalgam fillings in your molars, her conception via IVF, the loss of the other embryo and how this must have felt like losing a skin, a previous life trauma (for her or for you was never clear), a tetanus jab you had while unknowingly pregnant with her, an unnaturally clean house (this one makes you laugh), the confluence of your mild asthma and your husband’s occasional eczema, and so on. You decide to give up on the why and instead concentrate on the how.
There are times when everything takes on shades of mythology: you hold up her adrenalin injectors to the light, pondering that clearish yellow liquid, and realise that you have been given an elixir to bring your child back from death. You must stab her to save her. You can haul her back from the dark, but only if you have the right collection of items, only if you make an appeal to the right person. There are times when you chide yourself for being too fanciful. And then, when you are reading the story of Persephone to your daughter, you can’t quite believe how pertinent it is, and you wonder what people knew of this then. You and your daughter turn to face each other wordlessly, absorbing the tale of the girl who ate six fateful seeds, condemning herself to the underworld, and the mother who fought to bring her back.
You will take your children to a museum of anthropology, and you will gaze down at eighteenth-century amulets from Papua New Guinea, worn to ward off evil spirits, death, disease. Several are the circumference of a child’s wrist. A familiar commingling of hope, desperation and an urge to protect rises from beads, twine and feathers. You think: you too? You think: did it work? You are seized with the desire to slip your hand under the glass, take one, attach it to your child, to all your children, and walk quickly away.
You will become a person who can say to a beloved child, everything is okay, when you know that, just behind that curtain, someone is preparing a scalpel, which will shortly be used to drain an abscess on her leg. You will be the one who holds her down. It will be your hands on her knees, on her arms; it will be your torso pinning down hers. It will be your voice speaking over her screams, trying to reassure, trying to tell her it will soon be over.
You learn to smile distantly when people say, ooh, I don’t know how you cope. You learn that there will be days when the responsibility, the limitations, the threat feel overwhelming, devastating. At these times, you must take yourself off somewhere, far away from anyone else, somewhere you can cry and mutter to yourself. You will go on a course to learn how to do CPR, and as you pound the mechanical heart of the faceless dummy, counting down from fifteen, you think, one day this could be my child.
You will find reservoirs of strength you didn’t know you had. You will find friends who say, of course she can come over, I’ll vacuum and clean and wipe the house in preparation, I’ll scrub the tables, I’ll make eggless cookies, I’ll do anything at all, tell me what to do. You will be bowled over by kindness more times than you will be felled by callousness. You will think at times that you can’t bear it, but you do.
You grow a thick skin for the mothers at playgrounds who look at your child’s chronic eczema and say loudly, in her full hearing, “What’s wrong with her? Is it catching?” You will turn your face away when someone tells you they’re not inviting her to a birthday party because “it’s too much hassle.”
You will become so grateful towards people who show kindness and compassion to her that it will be hard for you to hold yourself in check. You have to tell yourself to be sensible, unemotional, when you encounter these terrestrial angels, not to embrace them with alarming intensity, not to thank them repeatedly. Keep it light, you warn yourself, when you see the teacher who insisted that your child be accepted for a place, despite the extra work this entails; the pharmacist who took one look at her and authorised an order for protective dermatological bodysuits, even though the GP deemed them too expensive. A woman in a department-store changing room who said nothing when blood soaked through your child’s clothes to leave stains on the seat. An allergy nurse who is willing to write letters for you, to lobby schools and education authorities for you, to come with open arms to the door of the ambulance when your child arrives in the throes of anaphylaxis.
You will want nothing more for your child, for all your children, than for them to live their lives unencumbered by worry, by discomfort, by the judgement of others. You will go to bed at night and breathe into the dark and think, one more day. I kept her alive for one more day.
You will not be fazed by tonsillitis, by appendicitis, by a child soaked to the skin at the beginning of a long walk, by vomit, by grazed knees, by splinters, by dungarees encrusted with dog shit, by hair stealthily slicked back with yoghurt just as you are about to board an international flight, by a lake of shampoo squeezed out onto the bathroom floor, by A and E visits for stitches and sprains and concussion, by crayon on newly painted walls, by rain coming through the roof of your house, by a learner driver wrecking the car. This stuff is small; life is large.
—
In Italy, we have driven down a road that has petered out into a rough, pebbled track. Will has reversed the car, silently, grimly, and sped back the other way. This second route seems to be narrowing down as well, the road surface becoming bumpier, the trees leaning closer. I am no longer meeting Will’s eyes in the rear-view mirror. I am looking only at my daughter, holding her close to me, as if this could make any difference. She is noticeably weaker, paler, still wheezing and clawing at her throat; my other children are subdued, silent.
Suddenly, from the dashboard, the satnav gives a loud beep. The screen flashes on, then off, and a map appears, the roads in white, the fields in green. We have contact. There is, it’s showing us, a junction up ahead and, several turnings away, a main road: beautifully straight, mercifully wide.
We are, the satnav informs us, with its inimitable, electronic calm, two minutes from the autostrada and eight minutes from a hospital. A red “H” is surging on and off in the corner of a screen as we drive, beaming us in, guiding us down: eight minutes away, seven, six. Will accelerates down the autostrada, speed limits be damned, and when we get to Orvieto Hospital, we will screech in at the ambulance-only entrance and I will leap out, already sprinting, my daughter held before me, like an offering. I will be thinking, oh no you don’t. Not now, not here. You’re not getting her, not today, not any time soon.
She is, she is, she is.
Acknowledgements
Thank you, Will Sutcliffe.
Thank you Mary-Anne Harrington and Victoria Hobbs.
Thank you Cathie Arrington, Sarah Badhan, Yeti Lambregts, Georgina Moore, Hazel Orme, Vicky Palmer, Amy Perkins, Barbara Ronan and all at Tinder Press. Thank you Jennifer Custer, Vickie Dillon, Hélène Ferey and all at A.M. Heath.
Thank you to my parents, for answering questions and providing documents; to my
sister, for sharing her recollections of our childhood; to Sarah Urwin Jones, for reassuring conversations about the nature of memoir; to Ruth Metzstein, for yet another inimitable last-draft steer; to Professor Rustam Al-Shahi Salman, for neurological editing and advice.
I am forever grateful to the following people for their expertise, compassion and support for my daughter: Dr. Adam Fox (who will always be known in our house as Fantastic Dr. Fox), Professor Jürgen Schwarze, Susan Brown, Sister Lowe and the team at Lauriston Place Dermatology Department, Daisy Donovan, Francisca Morton, Susana Montoya-Peláez, Charlotte Willson, Lorna Wills, Vivienne Mackay and Karen Ford. You have, each and every one of you, made an enormous difference to her life.
From the proceeds of this book, a donation will be made to the following charities: the Anaphylaxis Campaign, who support and lobby for those with severe allergies; Medical Alert Dogs, who train dogs to assist and protect people living with life-threatening medical conditions.
Illustration Credits
1 Mary Evans Picture Library/Gill Stoker
2 Falkensteinfoto/Alamy
3 Wellcome Library/Creative Commons CC BY 4.0
4 Custom Medical Stock Photo/Alamy
5 Archivist/Alamy
A NOTE ABOUT THE AUTHOR
Born in Northern Ireland in 1972, Maggie O’Farrell grew up in Wales and Scotland. She is the author of seven novels, After You’d Gone (2000), My Lover’s Lover (2002), The Distance Between Us (2004), The Vanishing Act of Esme Lennox (2006), The Hand That First Held Mine (2010), which won the Costa Novel Award, Instructions for a Heatwave (2013) and, most recently, This Must Be the Place (2016). She lives in Edinburgh.
I Am, I Am, I Am
By Maggie O’Farrell
ABOUT THIS READING GROUP GUIDE
The questions, discussion topics, and reading list that follow are intended to enhance your reading group’s discussion of I Am, I Am, I Am, the astonishing memoir via near-death experiences by Maggie O’Farrell.
QUESTIONS FOR DISCUSSION
1. The title of the book comes from a passage in Sylvia Plath’s The Bell Jar, in which a character seems to be reminding herself she’s still alive. Why is this an apt title for this memoir?
2. O’Farrell skips around in time rather than telling her stories chronologically. Why do you think she does this? What effect does it have on the reader?
3. Why has O’Farrell had so many near-death experiences—is she merely unlucky, or does something else explain it?
4. In “Neck,” O’Farrell describes her job at a retreat: “I clear away human traces, erasing all evidence that they have eaten, slept, made love, argued, washed, worn clothes, read newspapers, shed hair and skin and bristle and blood and toenails.” (page 5) Why does she view her work this way? What does it tell us about her?
5. We learn about O’Farrell’s neurological condition in “Lungs” (2000), when she seems to be on her way to drowning. What drives her to risk her life like this, when she knows her own limitations?
6. The chapter in which O’Farrell narrowly avoids being hit by a car is called “Spine, Legs, Pelvis, Abdomen, Head.” What does this refer to?
7. When she fails to secure postgraduate funding, O’Farrell abandons her fascination with Sir Gawain and the Green Knight: “I must shut the door on it—and her. I liked my connection with her, through the words of the story. I relied on it. I felt as though I had reached back through time, down through the pages of the book, and taken hold of her hand. But I must give her up. I won’t read the book again for many years.” (page 53) Why does she feel this way?
8. In various places throughout the book, O’Farrell paints herself in a negative light—for instance, says, “I am too volatile, too skittish, too impatient.” (page 54) What do you, the reader, think of her self-portrait?
9. How does the incident on the plane propel O’Farrell into writing?
10. Several of O’Farrell’s near-death experiences relate to the fact that she’s female. What role does gender play here?
11. At O’Farrell’s near-catastrophic childbirth, a mysterious man in beige steps in with an unexpected kindness. She writes, “When he took my hand he taught me something about the value of touch, the communicative power of the human hand.” (page 92) Why does this have such an impact on her?
12. After her “missed miscarriage,” what makes O’Farrell so reluctant to have the operation?
13. In the chapter entitled “Lungs” (2010), O’Farrell discusses her childhood fascination with the myth of the selkie. (page 120) Why does she think of this when she’s caught in a riptide? How does the memory help her?
14. What do we learn about O’Farrell from the story about the knife thrower?
15. In “Cranium” and again in “Bloodstream,” two chapters dealing with infidelity, O’Farrell switches to third-person narration. Why? How does this change your reading experience?
16. On page 206, O’Farrell recalls her father’s admonition, “Stay in your depth!” Aside from the drowning connotations, where else could this apply in her life?
17. In “Cerebellum,” we learn that many of O’Farrell’s behaviors may be a result of her childhood bout with encephalitis. How does this change your opinion of her?
18. O’Farrell describes the period during which she was sick as one of the key points in her life: “The hinge on which my childhood swung. Until that morning I woke up with a headache, I was one person, and after it, I was quite another.” (page 226) Looking beyond the physical and neurological effects of encephalitis, what does she mean?
19. Several times in “Daughter,” O’Farrell wonders what she did to cause her daughter’s condition. Why does she seek to blame herself?
20. O’Farrell ends her memoir with an echo to the title: “She is, she is, she is.” Why does this phrase resonate with her?
SUGGESTED READING
The Bell Jar by Sylvia Plath
Sir Gawain and the Green Knight; Giving Up the Ghost by Hilary Mantel
Seven Gothic Tales by Isak Dinesen
Lit by Mary Karr
This Is the Story of a Happy Marriage by Ann Patchett
Sex Object by Jessica Valenti
A Field Guide to Getting Lost by Rebecca Solnit
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Maggie O'Farrell, I Am, I Am, I Am: Seventeen Brushes With Death
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