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- Herausgeber: Hammersmith Health Books
- Kategorie: Ratgeber
- Sprache: Englisch
A practical, sometimes humorous, sometimes devastating, guide to the little-known, poorly understood but increasingly prevalent health problem, broken-heart syndrome, also known as takotsubo cardiomyopathy. This is a condition in which the heart muscle becomes suddenly and severely weakened, often as a result of great emotional and/or physical stress, causing the heart's left ventricle (main pumping chamber) to become significantly enlarged, resembling a Japanese octopus trap (a tako-tsubo). Correctly diagnosed and treated, the condition is thought to be fully reversible. Based around her own experience of this syndrome following a close friend's sudden death and her mother's suicide, the Author explains the risks, the signs to look out for, the Dos and Don'ts and the best ways to promote recovery. She includes a selection of other patients' stories that show the diversity of happenings that can lead to a takotsubo event, as well as input from two cardiogists/heart specialistis who share the difficulties of identifying and treating the condition.
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Praise for Juliet Sullivan’s The Gallstone-friendly Diet…
‘The Gallstone-friendly Diet is an amusing and informative journey.’
James Hopkins FRCS, Metabolic and Bariatric Surgeon, Bristol, UK
‘An excellent and amusing book with all the facts you need.’
Veronica McQuade, UK
‘Juliet makes you feel as though you are getting advice from a close friend. Unlike typical self-help books, this one will have you laughing, engaged… and making delicious gallbladder-friendly food!’
Donna Moore, Canada
‘Juliet Sullivan recounts her personal story in a very honest way. She takes you through her surgery and out the other side. Unfortunately for her, she spent five months suffering from her gallstones before having her gallbladder removed. Fortunately for us, as a result of this wait she has produced a wonderful selection of recipes that are less likely to initiate pain than are standard meals. This is a truly helpful read, but if you’ve got gallstones, get an operation soon!’
Giles J Toogood, Professor of Hepatobiliary Surgery
University of Leeds, Leeds, UK
‘I love Juliet’s humour and wit. As I am dealing with gallbladder issues, this book is perfect timing as I have had no idea what to expect. I have information now to help me understand what I am dealing with. Thank you!’
Lorelei, Texas, USA
‘Juliet Sullivan does a brilliant job of enlightening her audience with the facts that are necessary for understanding gallstones. Additionally, the recipes contained in this book serve as a really useful guide for anyone struggling with the dietary issues associated with gallstones. Considering that gallstones are a serious illness, Juliet Sullivan uses her humour to address the elements of unease and fear that can be associated with a diagnosis, and to assist those who struggle in navigating the lifestyle changes that will be needed. All in all, I give this book a 5/5. Fantastic job!’
Nicole Irvine, Canada
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For my mother, Margaret, and father, Ron. Though imperfect, complicated and eccentric, they are of course the reason for me – and by extension my two amazing children – being here. They would be delighted to know they received a dedication in this book, despite its contents.
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Contents
Foreword
‘We know there’s still something wrong with your heart; we’re not quite sure what, but at your age you will learn to live with it.’ These were the parting words of the doctor who discharged me from hospital in October 2013 after I had had a nearly fatal, unusual type of heart failure known as takotsubo syndrome (TTS).
The causation of the attack that almost ended my life had in all probability begun four weeks earlier, when I was involved in a road traffic accident and had been taken to hospital. There, I was told that the mid-back, breastbone and slight chest pain I was experiencing were probably due to the seat belt snapping across my chest after the impact of the other car.
Fast-forward four weeks, and still feeling unwell, I had a disagreement with a neighbour who had been blocking our driveway for four days with piles of bricks and sand. My polite request for them to move this onto their land led to a strong retort. Getting nowhere, I went indoors. I quietly closed my front door, but my heart did the complete opposite; it went ‘boom!’
Paramedics were called and I was taken to hospital. After being triaged, I was told I needed to see a doctor, only to sit in A&E (Emergency) for around eight hours. My whole body was shaking; I was turning blue and trying to focus on my breathing. At 11:00 pm, I was eventually seen, had various cardiac diagnostics performed and was admitted onto a ward.
When my blood results finally came through, panic ensued. I was viiitold that there was something seriously wrong with my heart and I needed to be moved to a different hospital. Following an angiogram at the second hospital, I was finally diagnosed with a severe attack of a particular type of heart failure, namely takotsubo.
After a four-day stay in the first hospital, I heard the words from the doctor I mentioned in my introduction: ‘At your age you will learn to live with it.’ That did not resonate with my psyche. Up to then I had been a fit and active 57-year-old with a background of fitness and dance, and I wanted to return to this. On finding a cardiologist who specialised in TTS, he organised further diagnostics which showed that even six months post-attack my heart had still not recovered and required two cardiac ablations.
Knowledge is improving but sadly today there still remains a misconception of takotsubo being a benign heart condition – a one-off event from which the patient will recover fully within days or weeks. Sometimes this is the case, but often women have ongoing problems and remain symptomatic. Frustratingly due to the condition being misunderstood, it is frequently mismanaged, leading to a poor outcome for the patient. I was lucky in that I found cardiologists who listened and understood.
Everyone’s story arc is different, and for me, I made a promise to myself that one day I would find a way to help others, to stop them from falling through the TTS net, as I had almost done. I hope this has been achieved in a number of ways, not only by myself but with some wonderful people I have met along the way. Initially, I set up a TTS support group into which another group merged and, to date, we have almost 4000 members: https://www.facebook.com/groups/TakotsuboSupport.
This led to the development of a dedicated website (www.takotsubo.net) covering not only general information on TTS but the clinical aspect too, specifically for the medical community; my cofounder happened to be a clinician specialising in TTS. Along with two others, I co-authored a paper: ‘Takotsubo syndrome: voices to be heard’, which was published in the EuropeanixJournal of Cardiovascular Nursing. My latest venture, along with two fellow patients, is the setting up of a new heart charity, Women’s Heartbeat, which specifically aims to improve women’s heart health and cardiac outcomes, by raising awareness of women’s heart problems via early diagnosis; as well as providing information, education and guidance for both patients and medical professionals, and promoting clinical research into heart disease in women. (www.womensheartbeat.com).
Juliet’s story is an honest and at times painful account of her TTS cardiac journey. She wears her heart on her sleeve (excuse the pun) and shares openly the background of her earlier life, through to her heart failure. She describes the pathway of the build-up of trauma over the years, culminating in the more recent two very painful incidents which were perhaps the straws that broke the camel’s back. There will be readers who can resonate with cumulative stress (who lives a totally stress-free life?), see similarities and appreciate Juliet’s honesty. Juliet illustrates how in some cases, buried and/or ongoing or sudden stress can change one’s life course in an instant and affect one’s heart to the point when it becomes stunned, is unable to beat correctly and these events result in the heart failing.
Dr Gupta and Professor Dawson’s interviews in the book give their expertise and insight into this fascinating, often undertreated condition, and the stories other patients share reflect different causations, journeys and how some have been lucky enough to find consultants who understand the condition whilst others have been cut adrift.
It is becoming more common knowledge that women continue to be second-class citizens when it comes to heart health per se, let alone with a condition that predominantly occurs in women. Women’s healthcare needs to now expand beyond the ‘bikini medicine’ model – i.e. the areas a bikini covers, the breasts and the reproductive area. There is a difference between men’s and women’s hearts. There is still a bias towards diagnosis, treatment and research in favour of xmen. There is most definitely a communication issue with regards to TTS.
Hopefully, by patients being outspoken, educating themselves and disseminating information, it will help them to identify what needs to be unlearnt – that TTS is not a trivial condition – and to re-learn what needs learning: that it can be a life-threatening condition and needs to be taken seriously. Books such as Juliet’s can help to socialise this information; we need to utilise as many sources for change as possible so that people understand this condition, leading to better education and outcomes.
With health and happiness,
Caron Curragh
PS – A week after writing the above Foreword, the behaviour of the same neighbour caused me to have another TTS episode, demonstrating that recurrence can unfortunately happen.
Acknowledgements
Thank you to my sister, Karen, who has shared most of this twisting, turning rollercoaster with me, and is one of the few who understand the turbulent and mixed-up emotions that come from complicated mothers and complicated grief.
Thank you to my friend Mia, who not only continues to support me unequivocally throughout my life’s trials and tribulations, but who gave me the idea to write about this one.
Thank you to my publisher, Georgina Bentliff of Hammersmith Books, who believed in this book from the moment I emailed her from my hospital bed, and for giving me free rein in its conception and creation.
I am very grateful to the Facebook group I found; as well as offering support, almost all of the information I gathered about TTS in the early days of my diagnosis came from the people in that group.
Thank you to the inspirational Caron Curragh, who wrote the Foreword for this book and whose commitment to giving a voice to women with heart disease is inspiring and very welcome to those of us who have struggled to find the information and support we need.
Thank you to Professor Dana Dawson, whose ongoing dedication to takotsubo is impressive and very much ap-preciated, and for her extreme generosity with her expertise and insight; as well as to Dr Gupta, for his continued support of women’s heart health, and for his kindness in sharing his xiivaluable time and knowledge.
Thank you to all the ladies (and one man!) who shared their stories for inclusion in the book. Their contribution has been invaluable.
To the friends and family who helped me through this, the toughest of times – whether it was providing an ear, a bed for the night, a text or a hug – you know who you are and I am so eternally grateful for your support.
And to Lee, Kerri, Liam, Tom and Dacre. You are my inspiration for all that I do; thank you for your love and care; it has made my heart whole again.
A note from the author
In 2018 I wrote a book about my ‘journey’ with gallstones, after being struck down with those odious little nuggets of pain, and for some reason being compelled to tell the world about them. Well, here I go again: writing a book about yet another condition that has suddenly surfaced in my life. I guess that’s the way it works with health – one day you are going about your business, taking your wellbeing for granted, blissfully unaware of your body’s sneaky little plans; the next minute you are confined to a hospital bed surrounded by people in blue coats with needles in their hands.
This new condition I have has lots of names – don’t ask me why. It’s like they (by they I mean the people whose job it is to give these things names) can’t agree. Well, actually, that is a fact: they can’t agree. After being told in the hospital that I had ‘broken-heart syndrome’, and then posting about my experience on an online forum, I was quickly reminded that the term was not popular, and was in fact frowned upon. I was told: ‘Some of us feel that calling it “broken heart syndrome” detracts from the serious nature of the illness. We prefer to call it “apical ballooning syndrome”, or “takotsubo cardiomyopathy”.’ (A takotsubo is an octopus-trap in Japanese. Yes I know that doesn’t really explain anything… be patient).
I understand why some people don’t like the term broken heart syndrome. It would appear to trivialise the condition, making it seem almost whimsical. (After diagnosis, one friend asked me if xivI had made up the illness. Fair enough; it admittedly does sound … well, made up).
Also, it is misleading. Takotsubo – or TS or TTS for short (even the acronyms are confused) – is not necessarily caused by an emotional event, which is what broken heart syndrome might suggest. As you will learn from some of the stories in Chapter 14 of this book, where others share their experiences, there are a multitude of reasons why people are stricken with it, including near-drownings, conflict, illness, car accidents, major disasters and loss. Confusingly, it can also be triggered by positive events, such as a lottery win or promotion. And sometimes (in fact, in almost a third of cases) there appears to be no trigger at all.1
The problem for me is, when three doctors come to me and tell me that I have ‘broken heart syndrome’, it is hard to dismiss the term. And in my case, broken heart syndrome describes exactly what I have.
As such, I use the term liberally throughout this book, but with the caveat that I acknowledge it is a misnomer.
You should know, and actually you may already have concluded, that I am not a doctor. Not only am I not a doctor, but I am no kind of health practitioner. I am not an expert in this, or anything, really.
I include a few facts and figures, but as this condition is a relatively new (or rather, newly acknowledged) and rare (as far as we know) one, what we do know about it is evolving, if slowly, and any research I allude to here is some of what is known to date. As a non-medical person, I try to make sense of it and relate it to you here in simple terms – this is a reflection of my limited brain capacity, not yours.
I personally knew nothing of takotsubo before I was confronted with it, and I’m not alone in this. Few people know about it – even some doctors – and as such there seems to be some catching up to do, not just by the general public but by some of those in the medical field too.xv
Before we go on, I feel I should explain the octopus reference: in the early 90s, a Japanese doctor, Dr Hikaru Sato, was the first to name the condition when he noticed that the heart, when damaged by TTS, took on the shape of and resemblance to an octopus pot. In Japan, takotsubo is the name for an octopus trap, hence the name ‘takotsubo cardiomyopathy’.
My intention for this book is to contain suggestions rather than advice; anecdotes rather than case studies; and overall positivity rather than gloom and fear. Speaking of which, please do not take me too seriously. My story is not an easy one to tell – among other things, I will be recounting my mother’s suicide – and the only way for me to tell it is with a tinge of humour. I believe in the power of laughter. And so, I hope my grim and (literally) heart-breaking story makes you smile a little.
(Having said that, I fully recognise that takotsubo is no laughing matter. It is, in fact, very serious, and I do address that side of it within these pages. Please understand though that this is my story, and as such is not in any way meant to belittle anyone else’s experience.)
As a writer, I would rather not be making a career based on tragedy and illness, but we have to make the best of what we’re given. On that note, please watch out for my next medical event; I fully expect to make this a trilogy. I am joking.
Julietxvi
PART I
Home is where the (broken) heart is2
Introduction
My heart breaks one Thursday in October 2023. I am not being dramatic when I tell you this. I literally have a broken heart.
I don’t much like having a broken heart as much as I like saying it; having it is inconvenient and irritating. It is also life-changing and not in a good way. But let’s face it – saying that I have an actual broken heart makes me interesting… like I will always have a more fascinating ailment than most of the people I meet; like I will have guaranteed dinner party conversation. Now, that sounds like a dinner party you can only wish to get an invite to.
I don’t (or rather, I didn’t) consider myself generally anxious or stressed. My emotions are usually kept firmly in check, where, as an English person, I was taught to keep them. (This could be a clue to my condition, but more of that later. Bet you cannot wait.)
And I wouldn’t say I have a particularly stressful life. I live on the beautiful west coast of Canada, with my laid-back husband and a cat. Cats are essential for stress management, as are laid-back partners. I am surrounded by good people whom I love. I manage to spend a lot of time in Brighton, England – my home town, one of my most favourite places on earth, where I have a whole network of more people whom I love. I practise yoga daily. I eat fairly healthily (though I do love chocolate, and wine). Basically, I don’t have it too tough.4
This Thursday in October of 2023 though – and come to think of it, the whole of 2023 to this point – has been a bit stressful. Actually, that may be a little bit of an understatement.
After diagnosis, the doctor says to me that I have a ‘textbook case of broken heart syndrome’, and what I think that means is that if someone was to write a guide or textbook on how to get the condition (please don’t buy that book), they would describe exactly what this particular Thursday in October consists of.
But before we get to that, I have to take you back to the days when my heart was whole and intact; the days of my unbroken heart.
Chapter One
Before the heartbreak
August 2022 Southern England
We are at a music festival. Only England can do music festivals like this: quirky, vibrant, diverse, full of colour and exuberance.* Living in Canada for the last 20 years has robbed us of the music festival scene, and so we soak it up, Husband Lee and I. It is one of the things we miss about living away from our homeland. I say we but I mean I; Lee doesn’t live his life the way I do, hankering after places or things. He doesn’t have takotsubo syndrome either. Just saying.
We arrive at the festival en masse, a group of friends that includes our grown-up daughter and her soon-to-be-husband, bags stuffed with hidden gin and tonics. We might be middle-aged but we still know how to party on the cheap.
As we dance and drink and laugh and sing, I feel lucky to have a group of friends in two countries. I have managed over the past 620 years to keep my best friends in England, while cultivating a whole new friendship group in Canada. It is one of the things I am most proud of as an expat.
Being an expat has not been easy for me. For those 20 years I have kept one foot planted firmly in both countries, and that has ensured a level of constant homesickness, financial ruin and exhaustion that only an expat, or perhaps a convict, will understand. Or maybe I have just been spectacularly bad at it: never fully committing to living in Canada; hanging on to my English roots; never really letting go, like a mother fiercely clinging to her child well into adulthood. (Oh wait, I do that too. I am the mother who still needs to know where her 35 and 26 year-old ‘children’ are at all times.)
But there is also a level of excitement about it, in an emotionally and financially draining way. The frequent flying across oceans; the relentless emotional goodbyes at airports; the constant change. It’s a jet-set lifestyle, in this case without the glamour or exotic destinations. Mine is the kind of jet-set lifestyle where I am permanently broke, exhausted and in a state of unrest. Yet I thrive on the thrill of it all. I am a dual citizen in every sense.
But in this, the summer of 2022, as I take yet another foray into my ‘other’ life in England, I have no way of knowing that it will be the weekend when my two worlds will collide, and set about the process of breaking my heart.
Lee and I are here for a friend’s wedding. I am also here to indulge the things I miss: my friends and family, obviously; but also British pubs, British shops, British music. You get the picture. The festival is in Portsmouth on the south coast. Scottish singer/ songwriter Paolo Nutini headlines the Saturday night and while I ‘sing’ along to his beautifully soulful tunes, I think about my 7music-loving friend Susan, who is 5000 miles away in Canada; she would really like to be here right now. We have plans for her to come to England in May 2023 for Daughter Kerri’s wedding and she regularly asks me to send her snippets of British life. I’ll send her a video of me singing along to Paolo tomorrow, I think to myself. She’ll love it.
We are staying in a house close to the festival, and when we finally get back there, after meandering through the streets, still buzzing with festival-goers and late-night revellers, it is 1:00 am. 5:00 pm in Canada. Lee is sitting up in bed, and as I get ready to join him, I notice that his face is white, stricken. He is staring with wide, glassy eyes at his phone.
And then he says, ‘Oh, no’. Two small words that strike fear into my heart. I stare at him, holding my breath. He looks up at me and says quietly, ‘It’s Susan’.
My reply is ‘Susan who?’ – playing for time while my mind starts racing through all the Susans we know. Because I know in this moment that I have lost a Susan.
‘Susan A-,’ he says. I gasp, without knowing the rest of this story, not wanting to know it. This Susan is one of the best people I know; a one-off; a beautiful, funny, brave woman; a loyal friend, not just to me but to many people. This Susan – mother of three young adults – recently sold her house so she could buy a van and travel around Canada indulging her adventurous spirit. This Susan is excited about coming to England next year, to Daughter Kerri’s wedding.
Lee says, ‘She drowned,’ the words so harsh, so final. So improbable. My first reaction, predictably, is disbelief. This is not possible. Susan is fit, healthy, a strong swimmer, a strong woman; 8the least likely woman to have drowned today. And then, as it slowly dawns on me, the realisation that this news is not a lie, or a bad joke, or simply wrong, fills me with an indescribable and all-consuming wave of shock. I scream, I collapse. For hours, my body won’t stop shaking. It is strange how your body takes over so absolutely in sudden trauma.
There are points in our lives that define us; the befores and afters. The forks, the bends, the lines that are drawn. This is one of those times for me. And as my brain tries to process the reality that Susan has gone, I somehow know that my world will shift on its axis tonight, and it will never again be the same. I have never lost a friend before. I keep repeating this fact out loud, as if it is relevant, or has any meaning. It doesn’t, but the fact of it is somehow jolting; another layer of shock that I cannot process.
We go back to Brighton, and the next few days are a blur. I carry on with my life in a country that never knew her, and somehow this mutes the reality, but also makes my grief a lonely place to be. At night I lie awake with thoughts of her in my head – memories, of course; but also imagining and trying to understand her unexplained death; feeling deep sorrow for her daughter and two sons; wracked with a sense of absolute and total loss. I wonder in these long nights how anyone survives grief; it consumes our bodies and minds so completely. It feels to me like I have been swallowed by it; like I have fallen suddenly down a deep, dark hole from which there is no escape.
After three days, one of my best friends, Mia, invites Lee and me to her house, a house that has for the past 20 years felt like a second home to me. It was the house where we spent our last night before we emigrated; it was the place my dad dived into the swimming pool to rescue one of the family rottweilers; it was the site of countless memorable parties and dinner parties; it 9was a refuge to me after my dad died, after my dog died, after I had my gallstones operation. I welcome its familiarity.
As we sit down to dinner my phone rings. I see my mum’s name and sigh heavily. I have changed the contact details on my phone from ‘Mum’ to her name; a small, private protest. My mum is a complicated woman.
When I had told her about Susan the day before, her reaction was to look uninterested and say nothing. Not one single thing. To be honest I hadn’t expected much – I had long ago given up expecting sympathy or interest from my mother – probably since the day my dad died and her words of ‘consolation’ to me were: ‘Well, he was a shit father anyway’, but the coldness in her eyes after being told about one of my best friends dying was jarring, even for jaded little old me.
I consider not answering the phone, but I have this masochistic need to subject myself to the anger my mother stirs in me. It is like an addiction. The first sound I hear from her is a sob. I am used to this. I wait for her to speak, and when she does, her voice is flat. ‘Are you at Mia’s?’
You know I am. Deep breath.
‘Yes, we are just having dinner,” I say. She is not happy to hear this, and I know it. I can sense the envy coursing through the phone line, stealing my energy. If she is not included, she doesn’t want to know about it. She certainly doesn’t want me to enjoy it.
After a long silence, she says this: ‘If I had the right pill, right now, I would kill myself.’
I gasp, though not with sadness or shock. I am infuriated – 10incensed – at her cruel disregard for my grief. But I am so exhausted from that grief that I cannot find the energy to release my anger. Instead, I swallow the torrent of words that start to form in my throat, and I take another deep breath – this one as deep as a breath can be – and then calmly say all the ‘right’ things. What are the right things to say to a pseudo-suicidal mother? Somehow I find them:
‘Tomorrow is another day’;
‘Try to get some sleep’;
‘I’ll come over to take you out tomorrow’.
I put down the phone and return to my dinner, tucking the rage away in a deep recess where the anger of 50 years resides.
The three people I am with (Husband Lee, Mia, and her husband) have heard this all before; when I relay my mother’s words there is no shock from them, just a resigned acceptance that she will not allow me to have an evening with my friends without placing herself at the centre of it. And she certainly will not let me grieve for Susan; she wants me to grieve for her instead.
She doesn’t have a pill, and she doesn’t kill herself. I had known this would be the case of course. But the next day, the guilt creeps in. It is an insipid, evil emotion, this guilt I carry. It fills my head with its accusations: I am a bad daughter. I don’t care/help/talk to her enough. I abandoned her to move to Canada. I should have delved more into her suicidal ideation. I should have comforted her. I should have mothered her.
My mother has alienated many people in her life. She writes people off if they have wronged her in some way; usually the ways they have wronged her are imagined, or exaggerated. But in my moments of guilt, or forgiveness, or love, I defend her; there are so many reasons why she is the way she is: she is old; 11she has a worsening eye condition – macular degeneration – which has made her almost blind; she is a recovering alcoholic; she is mentally ill; she has had countless rounds of electric shock treatment; she has been sectioned twice; she has been institutionalised long-term, more than twice.
But I, too, am damaged. I am damaged from the years of my mother’s alcoholism and illness; from the lifetime of regret, sadness, fear; from my parents’ toxic relationship. I was 9 when they divorced; 13 when Mum tried to take her own life the first time (during my lifetime); 15 when she came out of the mental hospital where she had become a frail shell of a woman. I bury those memories deep, too deep for my own good.12
* Sweeping statement/unnecessary patriotism alert! I love to claim that England does things better than anywhere else, but please know that I am not as arrogant as I may seem (although Husband Lee may disagree. Rude.)
Chapter Two
Digging deep: tales from a troubled childhood
1975 Brighton, England
I have very few memories of my life before this night. I don’t know if I just have a really bad memory, or if my life up until I was 9 was just really boring; not worth remembering. I suppose it is more likely that the trauma of it all erased almost all that had gone before, like I’d had a bump on the head, and just like that, those nine years evaporated.
And so my childhood begins here, on this night, the night before my family dissolved; the night when my dad lay crying between my sister Karen and me in my parents’ bed. The sight – and sound – of his sobbing was shocking. At some point he stopped crying and fell asleep, but I lay there for hours, awake and frozen, in a state of confusion and guilt, until the morning shone its harsh and ugly light back into my fractured world.
The evening before, Mum and Dad had sat Karen and me down, told us they were separating, and asked, ‘Which one of us do you want to live with?’14
‘Great question!’ I responded brightly. ‘Thanks for asking! I mean, obviously we would prefer to live in a stable, two-parent household, but should that not be a possibility at this time, then I think, speaking on a practical level, and on behalf of both Karen and myself, I feel that we should probably opt to live with the parent who has the emotional and financial capacity to bring up two pre-pubescent girls!’
I didn’t say that; I was 9. What I did was stare at them both in horrified silence, my voice twisted in my throat, whilst Karen sobbed quietly beside me. At one point I felt hot wet tears sliding down my face, but I wiped them away quickly. I knew that this was a big day for us as a family – a turning point of some kind – and I knew I was expected to be grown up about it, because that’s what they kept telling us we should be, but I didn’t feel grown up; I felt small, and inconsequential, and scared.
At some point in the proceedings it was agreed between the parties that Karen and I would stay with our mother, though I don’t remember being one of those parties. I don’t remember agreeing to anything. In retrospect, I suppose my silence was my complicity. Hence the twisting vines of guilt that crept like a slithering snake into my young, undeveloped brain that night, and have never left.
The next day, my red-eyed father left the house carrying three black bin bags, like he was taking out the rubbish, and we didn’t see him again for two years.
Because I have a tendency towards the dramatic, I would later claim to anyone who would listen that if I had a chance to go back to that night, and I was asked that question again (‘Who do you want to live with, Juliet?’), I would probably not have been silent. I would have probably screamed from the rooftops, 15as loudly as my little voice could carry me: ‘Please…. anything, anyone, but her!’
Her. My mother. Margaret. When I was born, she said, ‘Oh, I wanted a boy’. Which would be funny, if she hadn’t repeated this to me regularly throughout my life. The last time she said this to me was shortly before she died. There was nothing in her childhood to suggest the chaos in her mind that was to come later.* She had a well-balanced, lower-middle-class upbringing with loving parents and two younger brothers.
She met and married my dad when she was in her mid-twenties, when she was a dark-haired voluptuous siren of a woman. My dad was a handsome ex-racing cyclist with an entrepreneurial, and (according to my mum) philandering, spirit. My dad had gone off to the RAF in Hong Kong as a ‘normal young man’ according to his mum, but after a near-fatal bout of polio, had returned as a wildly ambitious, money-hungry and egotistical womaniser. My mum was physically strong, strikingly beautiful, yet fragile and vulnerable. Theirs was a passionate but doomed union; a raging tornado colliding with a house built from sugar and sadness. That they stayed together for 13 years was remarkable, but those years were cruel to all of us. I don’t think Mum ever recovered.
After Dad left, I stopped washing myself. I only remember this because one day at school I was repulsed by an unknown odour so bad that it made me gag, and some days later a boy I had been 16flirting with, Sean, asked me when was the last time I had had a wash. I was mortified, crushed. But still I didn’t wash.†
I had been sporty and popular at school, but the not-washing thing changed all that. Kids are quick to judge, and it turns out they don’t much like hanging out with smelly girls, however sporty and popular they are.
We lived in a skinny three-storey house in Brighton that had been bombed in the Second World War and rebuilt in the 60s. It had an air of regret about it, like it was bitter about its history.
I remember orange cabinets in the kitchen, orange curtains in the living room, and I am sure I remember orange carpet. Why so much orange? I hated that house and its orangeness. We lived there for years – around 10 I think – but it never felt like home to me. There was a strange presence there; I always felt like I was being watched or followed. My mum swore that there was a resident poltergeist (which was mine and my sister’s fault obviously – seeing as poltergeists were attracted by adolescent girls, according to her).
