AM I UGLY?
Michelle Elman
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In today’s world of supplements, celebrity diets and social media, it’s very easy to be hard on ourselves about the way we look. With all this pressure to strive for ‘perfection’ aesthetically, it is easy to forget how damaging this can be psychologically.
Michelle Elman is a leading part of the body positivity movement that has been gathering momentum to liberate people from these unrealistic standards, recognise that all bodies are equally valuable and broaden the billboard definitions of beauty.
Am I Ugly? is this inspiring woman’s compelling and deeply personal memoir that describes her childhood experiences of life-threatening health problems, long stays in hospital and fifteen complex surgeries that left her scarred, both mentally and physically. The narrative follows Michelle’s journey from illness to health, and from childhood to adulthood as she deals with her body-confidence issues to embrace both her scars and her body – and help others to do the same. This remarkable book grapples with the wider implications of Michelle’s experiences and the complex interplay between beauty and illness.
Welcome Page
About Am I Ugly?
Epigraph
Author’s Note
SECTION ONE
1. Am I being a drama queen?
2. How did I end up back here?
3. Is my body even mine?
4. Am I OK?
5. Am I worried about dying?
6. Is perspective the solution?
7. Why was I spared?
8. Was I still lovable?
9. Do we all need control?
SECTION TWO
10. Do friendships stand the test of time?
11. Who does revenge hurt more?
12. Did anyone care?
13. Am I fat?
14. Do you have to stare?
15. Is this friendship?
16. Can you just stop eating?
17. Are all boys like this?
18. Can I change things?
19. How long could I keep hiding my scars?
20. And how do you feel about that?
21. Am I an adult now?
SECTION THREE
22. Do I have to ask?
23. What does it mean to be a woman?
24. What is love?
25. Is anything simple?
26. Will I ever be normal?
27. Will I ever go home?
28. Am I in control?
29. Skinny or healthy?
30. Is living in fear living at all?
31. Is this real?
32. Am I still me?
33. What’s my identity?
34. What happens now?
35. Is this what happy feels like?
36. Am I ugly?
Epilogue
Acknowledgements
Further Resources
About Michelle Elman
About Anima
Copyright
For every child that is lying in a hospital bed wondering what they did to deserve this – you aren’t alone.
Some of the names of both people and places in this book have been changed in order to protect the dignity and privacy of the innocent – and particularly, the not-so innocent. Identifying details about individuals and locations have also been changed, but the stories that are told within this book are all factual and accurate to my recollection.
The events that occur are exactly how I remember them happening at the time; however, as with any story, my experience will be biased by my own perceptions. This is my most authentic truth and I take solace in knowing that I would be the villain in someone else’s story but for now, this is mine.
My school uniform – a kilt and pinstriped shirt – was clinging to the carpet. The lavender tie around my neck was tangled and trapped under my elbow, restraining me even further. I felt a prickling sensation on my face where it had hit the floor – and my head was throbbing. It took a while for the sounds of the room to return. I heard the girls screaming, and then I heard them being silenced.
Footsteps approached slowly.
It was Mrs Wright, my teacher.
‘Stand up.’
I had fainted at school, the second time in the week. It was my first year at boarding school in England. I was just eleven, a small and skinny girl with a tight ponytail and bright pink and purple glasses. There had been the usual stresses of adjustment to a new school and being away from home for the first time, and these had been compounded by migraines. Terrible migraines. The week before, as term exams approached, the pain had been so excruciating that I’d had difficulty standing. In the nurse’s office I was given a painkiller and a cool cloth for my head and sent on my way, back to class. Later, when I became dizzy and fainted, I was taken to the medical centre for further examination. The diagnosis: I was coming down with the flu.
When the flu didn’t come, I returned to class and fainted again. I was taken to see another doctor, who diagnosed my problem as emotional. Stress was the culprit. The mega-hothouse climate of St Keyes, where girls from all over the world came to a remote and boggy corner of the British Isles to receive a traditional education and compete with each other on a microscopic level in every aspect of their lives – academically, socially, musically, right down to who had the best handwriting – was to blame. The school motto: Trust, Encouragement and Mutual Respect, which was drilled into us constantly, to the point of misery, had done little to mitigate the pressure.
The doctor had declared that I was stressed from the workload and exams and told me to take it easy, try to relax, and rest. I did as I was told – or as much as a St Keyes girl knew how to rest. While I spent the entire weekend in bed, my friends took turns sitting beside me and helping me review my course material and study. Exams, just a little more than a week away, were considered the benchmark of the entire year; so while I could rest my body physically, my brain couldn’t take the same kind of break. With this in mind, I began attending class again.
That morning, a Saturday, I was preparing for chapel when I began to feel weak again. I visited the nurse who gave me a painkiller, slapped a futile ‘cooling strip’ across my forehead and told me that I needed to return to class. But the throbbing in my head was excruciating. I walked to class crying.
What I haven’t yet explained is that having a so-called ‘headache’ wasn’t new to me. It’s not that I was used to them – you never get used to that kind of knives-in-the-brain pain – but I’d been having them ever since I could remember. I have a condition called hydrocephalus, which is an excess of cerebrospinal fluid. This condition had led to a series of surgeries when I was younger, the last being when I was seven, in order to ensure the fluid was draining correctly. It is this fluid that causes extreme pressure in the brain and as a consequence, all-consuming agony – when your brain feels like it is pushing on the edges of your skull and the pounding is relentless. Bam. Bam. Bam. Throbbing. Throbbing. Throbbing. As though your brain is trying to hammer its way out of your head or escape, like an animal clawing at a cage that it’s trapped inside.
*
My lesson that morning was with Mrs Wright, one of the most senior members of the school staff, a harsh and stuffy woman with a hollow, haggard face, short-cropped white hair and a long bony body. As soon as I entered the class, she reprimanded me for being late and told me to take a seat. At my desk, I lowered my tear-stained face and rested it on my crossed arms, hoping the migraine would ease off and the painkillers would kick in. But the pain and pressure only increased.
When I began to cry again, one of my friends asked if she could go into the cupboard and get my pillow. I had made it in textiles class: a blue pillow, decorated with a bright red cherry on the front. In the last few weeks, these headaches had become even more frequent and my friends knew I often put my head down on it during the breaks between lessons. This time, though, the pillow didn’t help and I continued to cry. And I guess my sobbing had become audible.
*
‘Michelle, I am finding it very hard to teach when you are being so loud,’ Mrs Wright said. ‘Can you keep it down?’
When I wasn’t able to be quiet enough, she ordered me to leave the classroom. I stood, following her orders. I suddenly felt weak and unstable. I walked as far as the door and opened it, when I felt all the energy drain out of my body. I collapsed on the floor – just at the threshold between hallway and classroom – and lost consciousness for a split second, then awoke feeling out of focus and confused. I could feel the carpet burn on my face. Some of the girls in the class were screaming.
‘She is going to be fine,’ Mrs Wright announced in a deadpan voice. I remember thinking, even then, that her blasé-detached manner was very strange. ‘She’s just being a drama queen. Michelle, stand up, stop being silly. This isn’t funny.’
Was I being a drama queen? Every time I had complained, cried and caused my parents to worry over the years, I had elaborately and carefully weighed the risk of that. I hated asking for special treatment. I hated making anybody worry. Ever since I could remember, people had been anxious around me, fretting and worried. As a baby I was listless, unable to sit up, and never learned to crawl. There was very little known about hydrocephalus in Hong Kong, where my family lived, and the doctors were largely inexperienced in how to solve it. The usual treatment is to instal shunts or, as I called them in my childlike language, ‘tubes’, which drain the water from the brain to the stomach. In Hong Kong, however, these tubes were installed in my body incorrectly and resulted in infections and blood poisoning – and left a latticework of surgical scars that cross my stomach and head. The drugs weren’t much better. At the hospital in Hong Kong I got the nickname Barney, after the children’s TV character, because whenever the doctors tried a new drug on me I turned purple. Eventually my parents flew me to Los Angeles, where a neurosurgeon at UCLA properly diagnosed and treated me, with even more surgery – partly to fix the bad work that had been done before. By the time I was seven, seven different surgeries had taken their toll on my body.
*
‘Michelle. Please stand up.’
I managed to mutter only two words: ‘I can’t.’
Mrs Wright continued to speak to me as if I was capable of replying, as if this entire fainting episode was a game that I was playing and she was determined to make me lose.
‘Well, at least turn over and move out of the door,’ she continued. ‘You are eating into valuable time with the class. Do you want to be selfish?’
My foot was propping the door open, and this uncertain position – not open, not closed – seemed to frustrate Mrs Wright as much as my motionless self on the floor.
*
‘You are blocking the door, Michelle. I am only going to say this one more time. Stand up and stop making a scene.’ She punctuated each word as if it were the end of a sentence, in equal parts venomous and eloquent, spoken in a slightly hushed tone so as not to cause a scene herself.
I remained silent.
‘Michelle, this is your final warning. If you don’t move, I will move you.’
Without a moment’s hesitation, she walked over, bent down, took my head in her hands and moved it to the side, flipped the rest of my body over with her foot, and then tucked her hands under my arms and dragged me out the door and dumped me in the main foyer of the building – the exquisitely lovely arts centre of St Keyes: just one of many castle-like edifices on the extensive grounds of the esteemed school complete with lake, white swans and gloriously gloomy chapel. All the loving care and nonstop fundraising that had gone into maintaining its perfection, and the unassailable academic reputation of the school, was far from my thoughts as I felt only the carpet burns on my face and the frustration of not being able to speak or articulate how I was feeling.
I remember what I was thinking, though. This is what it feels like to be dead. Or worse, to be lifted up like trash and placed on the side of the pavement.
I rolled onto my side, the only position that had the potential of relieving some of the throbbing in my head, and wrapped my arms around my face tightly to block the glaring light and buffer the noise. I heard Mrs Wright on the classroom phone, making a call to the nurse. Then the school bell rang and my schoolmates began pouring into the corridor; some of them just walking around me, others stopping to see how I was.
‘Everyone back in your classrooms now!’ Mrs Wright bellowed. ‘You are not to come out – stay inside!’
I opened my eyes briefly to see the expression on a girl’s face who was asking for permission to go to the loo before her next lesson. The girl looked down at me woefully, with great pity. It was a look that I was accustomed to, but had gone to great lengths in my childhood to avoid. I closed my eyes to avoid her stare.
‘Fine, but be quick!’ Mrs Wright said impatiently. She walked around me and then knelt down in front of me, sending a strong waft of her pungent perfume in my direction. ‘Look,’ she said, lowering her voice to talk only to me, ‘I realize you don’t want to take exams and that you think faking it is the solution, but none of us are buying into this. These dramatic scenes will not be an excuse for you to miss your exams.’
‘I’m not faking,’ I stuttered. There was much more I wanted to say, but I was too fragile to utter another word.
‘Look,’ she continued, ‘you won’t get in trouble if you admit to us now that you are making this up, but if you continue – and we inevitably find out that you’ve been faking – you are going to be in serious trouble, Michelle.’
It wasn’t just Mrs Wright who wanted this admission. If a guilty confession would’ve resulted in the relief of the excruciating pain, the words would’ve flown out of my mouth faster than I could think them. There was nothing I wanted more than to jump up and reveal this was all a joke.
Mrs Wright continued her inquisition, which was beginning to seem like a tactic used on prisoners of war and hardened criminals to get them to talk. ‘Well, if you are so ill, then I am guessing you will have to stay in bed for all of half-term. What were you planning to do during half-term?’
Half-term at our school fell directly after our yearly exams. For that week, I had planned to go to France with my new best friend Annabel and her family. Annabel was a funny, outgoing, bright girl who was well liked by the whole year and our burgeoning friendship had helped me make the socially lonely transition to a new school. Annabel had an uncompetitive and open nature that was rare at St Keyes, where I was beginning to learn that relationships were fleeting and girls were quick to bad-mouth each other in an attempt to gain popularity.
As soon as I revealed my plans to Mrs Wright – ‘I’m going to France with Annabel and her family’ – I realized it was a mistake. This information gave her an edge, something she was hoping for.
‘But if you are so, so ill, Michelle, surely you won’t be able to make that trip. Which class is Annabel in? I am going to get her mother’s number now and tell her that you can’t make it.’
Unwittingly, Mrs Wright had gotten to the core of why I hadn’t told my parents about the growing severity of my headaches over the year. I wanted a normal year and to have fun half-term plans like a normal girl. Usually, I told my parents everything. When I was sad, angry or emotional in any way, my dad was always my first call. He would listen carefully, give me good advice and calm me down. But I never talked to him about my health. Although we never spoke about this at home, many years before I was born, my dad had lost his first child, a seven-year-old boy named Michael, due to a fluke overdose of potassium in a Hong Kong hospital. This silently, yet dramatically, underscored my situation. Even more so because I felt my name was reminiscent of his, and emphasised the connection more than my sister or brother’s names did. I never wanted to share anything that might cause my dad to worry. He had already gone through enough. Further to this, I knew that any discussion of pain would result in more tests, more doctor’s appointments and at the very worst, hospital. A place which I was determined to never return to again.
Mrs Wright had a mobile phone in her hand. ‘I’m calling Annabel’s mother now…’
In that instant, two nurses arrived and helped lift me to my feet and walk me slowly to my dorm, at the furthest end of the school. The second that I was put in a bed, my head sunk into a pillow and my pain began to lessen – but did not ever go away. Three days later I was moved to the school’s medical centre, where I spent four more days in agonizing pain, unable to eat, unable to keep anything down, drifting in and out of consciousness.
Mum arrived. That’s the next thing I remember. The moment I saw her face, all the fear I had been suppressing came out in an overflow of tears. As I hugged her, I finally allowed myself to feel scared and worried. I had wanted to admit to my parents all I had been through, but didn’t want them to fly across the world on my account. But her arrival meant I didn’t have to ask. She came anyway. I knew she would look after me, make all the decisions for me, and advocate for my best interests. Being with Mum allowed me to be a child again, relieved of the burden of trying to assess and judge my symptoms or keep my headaches a secret. No longer would I have to be strong and pretend I was OK.
The nurses began packing up my clothes and belongings, while Mum helped me out of bed for the first time in days. As soon as I sat up, with my legs swinging down off the bed, a sharp pain hit me again. Mum helped me walk out of the school gates and get into the taxi, when the teacher accompanying my mum around the school called out in a chirpy voice, ‘See you on Monday!’
That was just two days away. Would I really be better by then?
As I lay in the back of the taxi, with my head propped on Mum’s lap, I drifted off to sleep and only awoke the following morning in my parents’ bed at their London apartment. This was an indication of how sick Mum thought I was. Ever since I was little, probably like most children, there was something very special and comforting about being allowed to rest in my parents’ bed. But it only happened when I was severely ill.
I looked around the room for my mum, but she wasn’t there. Something else was missing too: no migraine. Perhaps all I had needed was a proper night’s sleep in my own bed. Maybe I was going to be OK. This felt comforting until another thought occurred to me: it might have been stress from exams, or just my imagination, after all. It would be hard to prove I hadn’t faked the whole thing. I might have to return to school and issue an apology to the hideous Mrs Wright.
I decided to sit up – a physical movement that would cause the fluid pressure in my head to change. If I were truly unwell, the pain would return. I slowly placed my hands on the bed, propping my frail body against the headboard, and with a bang, the migraine returned – and with it, a mix of emotions.
Mum entered the room with a bowl of her homemade soup for breakfast. This provided me with brief solace until I noticed – and it wasn’t difficult – that she had worried herself into a mode that was all too familiar to me: hysteria. She paced all over the room, then finally sat down long enough to become immersed in her laptop, and I knew her mind would be racing with questions and solutions. Mum had a fiery and passionate nature, and rarely sat still – something I assumed was the result of her upbringing in Singapore by Chinese parents, which had been Cinderella-like and harsh, full of hard work and the responsibility of raising her siblings. Right now, I attempted to stop her from making rash decisions, reassuring her that this was a passing phase, that I would be fine soon.
But I could see that it wasn’t open for discussion. When my mum had her mind set, there was nothing to be done to change it. She was immoveable and headstrong. And despite her insistence that women be ‘ladylike’ and ‘compliant’ – something that was clearly drummed into her by her parents and culture – she was outspoken and non-compliant herself, particularly when she swung into Mother Protectress mode. Well known among her friends as a ‘character’, she was actually quite a homebody and didn’t like to socialize, yet when she organized the occasional dinner party for our near and dear, she went above and beyond. This was her way of expressing deep love and loyalty, along with home-cooked meals, carpooling and overseeing every aspect of my care and my brother’s.
For Mum, love was demonstrated in deeds, not words. But in the last few months I had needed more reassurance. Over the Christmas break, my family and I had been stuck on a boat during the terrible tsunami in Thailand. When we came ashore, after the storm surge was over, we’d seen dead bodies on the muddy roadsides and heard the wails of grieving family members. Mum had told my brother and me to close our eyes – and not watch. But soon after, when I got back to school in England, I began insisting that each conversation with my parents end with the words ‘I love you.’ If we forgot to say it, I would call them back. This obsessive need for love to be conveyed, and not just shown, was met with confusion by Mum, who had grown up in a practical Chinese culture where children were born, and seen, only as eventual caretakers. She was a source of strength, a pillar of fortitude, and rarely displayed emotion or focused on her own needs. We were her priority. To her way of thinking, every action exuded love and words were just words.
‘Why do you need me to say it again? Of course I love you. Isn’t it obvious?’ she would say, unnerved. ‘My own mum has never told me that she loves me and I already told you yesterday I love you, so why would today be any different?’
Now, as I sat ruminating in her bed, Mum phoned local hospitals and called my dad back in Hong Kong, to discuss options. It was decided that we needed to fly to Los Angeles, where all my medical files were kept from my last surgery, as well as the neurosurgeon who had properly diagnosed and treated me when I was a little over one year old and then again when I was seven. Los Angeles? This seemed so extreme and sudden.
‘We don’t have time to waste,’ my mum adamantly stated. In less than an hour, I was in the back of another taxi, my head resting on her lap. We were on the way to the airport. Except, in order to get on a flight to America, I needed to pretend that I was healthy. If I even looked vaguely ill, they wouldn’t let me on board. Mum knew that better than anybody; before she married my dad, she had been a flight attendant.
At the airport I put on a smile and acted as though everything was OK – I was very good at that – but I still needed to take breaks to sit down regularly on our slow walk to the gate. On the plane, I rested my head on the cold window and fell asleep. After the flight attendants got word that I would be receiving medical attention upon arrival in Los Angeles, I was moved to an empty row of seats, where I was allowed to sleep lying down with a blanket and pillows. I woke from the bumps on landing. We had arrived.
Looking around the UCLA hospital parking lot, I felt uneasy and disorientated. My legs were shaking and unsteady. With a stumble, I scraped my knee on the cold concrete before landing in my mum’s arms. The next few minutes were a whirlwind of people around me. I was lifted onto a gurney and wheeled into the hospital.
‘You remember Dr Alfiderez?’ my mum asked.
I struggled to recognize his face. ‘Where is Dr Bentley?’ He was the one I remembered and was used to.
The bright lights of the emergency room aggravated my headache. I curled onto my side and assumed my usual position – tucking my face between my arms to shield my eyes from the lights and buffer my ears from the sounds. My gurney kept moving, the rotation of its wheels softly reverberating through my body as I was rolled along passageways and never-ending corridors.
When I allowed myself to peek out into the world, the chaos of the emergency room terrified me – I felt a sense of true terror and panic. There had been a terrible shooting on the Los Angeles freeway and the wounded victims were all around me. Their blood was splattered on the walls and floors, in swirls and drips. Arguments and drunken conversations erupted in front of me, dramatic and charged, as if taking place in an action film with a scary twist – the kind of movies I was never allowed to watch. The nurses tried to protect me from views of the vomiting, urination and defecation, all of which filled the air with awful smells that made me wince and gag; I had to force myself to keep control over my own bodily fluids.
I focused on the cold, sterile hospital environment, familiar to me from the past – where people rush around you, poking and prodding and acting as if the human inside you no longer exists. I was lying on the gurney as hospital charts were passed over my head. I was handed off from one nurse to another, my gurney swapped again and again before being pushed through new corridors. I fell into my passive hospital self, the old hand who knew if she heard the words ‘CT’ or ‘MRI’, that it meant I would be heading to the jail cell of the imaging room. The walls would close in and I would feel very alone.
As a little girl, MRI scans and CT machines were a familiar part of my childhood, like medical check-ups and the scheduled doctor’s appointments; but they never got easier and I always pleaded to have my mum by my side. Occasionally, if I made a big enough fuss, she would be allowed to stay with me. She would hold my foot, softly, gently, so I could feel her presence. But, most of the time, it was just me and a machine. The MRI was a perfect torture device; a place where I was paralysed both literally and figuratively, left alone with thoughts that I didn’t want to have. The head brace was only a few inches from my face, escalating the sense of claustrophobia as the machine surrounded me and spun around my head. A voice inside kept saying, Don’t move. Don’t move. Whatever you do, don’t move. If I did move, the scan would take twice as long. The noise of the machine provided the ideal soundtrack for this isolation: a loud groaning and droning that circled and circled.
How did I end up back here?
The scans arrived quickly. They showed that nothing was amiss. That was when I began pleading quietly and silently for something to be wrong – otherwise my complaints had brought my mum all the way from Hong Kong to England and on to Los Angeles just for a simple headache.
As I lay on my gurney in the waiting room, I saw my mum in the far corner having a discussion with the doctor.
When they were finished, I was told that a procedure was going to take place. They were going to operate just in case. And they were going to operate now. Another emotional rollercoaster ride was beginning.
I hugged Pogo, my stuffed toy that Mum had given me which I’d brought from school to keep me company. I said goodbye to Mum and tried not to see the fear in her eyes, knowing she would be left to wait alone for the next couple of hours, and I nuzzled my head into Pogo’s soft face. My gurney was rolled down more corridors and hallways. I felt a cool breeze against my robe as the door to the operating room was swung open. In the last four years of no-surgeries, I had forgotten this feeling – doctors and nurses surrounding me on either side, lowering the handlebars of my bed, lifting the sheet up from below, carrying me over to the metal plank where the operation would take place. I looked up at the lamps glaring in my face and the machines that were supposed to keep me alive. My breath quickened, a nervousness growing, an urge to get up and run out of the room, while they prepared the injection to put me under, and then the mask to follow.
*
Somewhere far away, in the foggy distance, I could hear voices counting down from ten, while my body became heavier and heavier and my mind slipped into nothingness.
*
Pain everywhere. A dull ache filled my entire body, weighing down on me as I struggled to open my eyes. Slowly awakening in yet another hospital room, a nurse and my mum were at my bedside. Thankfully, my mum had made the right decision in taking me to hospital. My tube – the shunt draining fluid from my brain – had been broken. I had a vague feeling I knew what had caused it, but I had refrained from mentioning it. A few months before, while playing with my neighbour in Hong Kong – a toddler, not much older than two – he had punched me in the neck. I immediately began to feel a little lightheaded but had continued playing with him, insistent nothing was wrong. It was only a week later, when the doorbell rang and I turned to answer it, that I suddenly lost my vision for an instant. My first thought at that moment was that it had something to do with my tube. Maybe the punch had broken it. So I ran my finger along my neck, down the side of my tube, as I had been taught to do (‘You’ll know if it’s broken, because you’ll feel a break…’). But I felt nothing – no break. My little self-test turned out to be wrong.
‘How is the pain?’ the nurses asked me.
Agonizing. But I wasn’t going to share this in the presence of my mum. I could see panic in her eyes and exhaustion on her face. She had clearly been awake throughout the night as she awaited the news of my surgery.
I smiled to reassure her.
‘Get some rest, Mum,’ I said. ‘I’m going back to sleep.’
Sleep was the easy solution.
*
Abdominal surgeries are dreadful to recover from. When they cut into your intercostal muscles, you become aware of how often you use them – for sitting up, standing, walking, reaching, and coughing. The worst was sneezing. When I cried out, the nurse urged me not to move and arranged the pillows around me.
Each day in the intensive care unit, I was assigned a new challenge, a new pain-inducing exercise to accomplish, from sitting up to walking. My main motivation was the goal of being able to use the toilet – rather than the soul-destroying process of having to relieve my bladder in a bedpan, and having my mother lift my bottom to insert the bedpan under me. I had never learned to aim properly, and bedding always needed to be changed. And the changing of the bedding only induced more pain, as I was rolled from side to side with three people holding my body in place. Eventually, after five long days, I made it to the toilet myself.
In celebration of this accomplishment, I was allowed to leave the hospital. Mum and I moved across the road, into short-term accommodation used by parents of young patients, where my mum had been staying all along. My dad was still in Hong Kong, looking after my brother who still lived back there.
Daily check-ups continued, as well as appointments and blood tests, but the freedom to walk outside and to eat something besides hospital food was a luxury that I promised myself I would never take for granted again.
*
On the day of my flight back to England – and back to St Keyes – Mum and I had a few hours to spare and we ventured a bit further into the city. Mum said we could do as much shopping as my body could handle. When was the last time anybody said this to you? I was excited beyond belief and quickly began searching for presents to give my friends and classmates, and a few things for myself. We were in Los Angeles after all. And as we perused the shops, and settled into lunch, I found my stamina and strength returning.
Suddenly, it occurred to me that only a week had gone by since we left England. Hard to believe, but exams had just finished at school. This meant that my trip with Annabel was still a possibility – and I immediately began telling Mum about everything Annabel and I had planned to do in France, and how much I still wanted to go. Of course, Mum wasn’t convinced. I had just had major surgery. Instead, she suggested that my dad come over from Hong Kong to England with my brother and we could spend half-term together in a calm, relaxing way. We began to bicker about this, just as lunch drew to a close. Frustrated, Mum stood up. It was time to leave. Just as I pushed out my chair and stood up, I began to sway and wobble. I caught a grip on the edge of the lunch table to keep myself from falling.
‘Mum, I have something to tell you.’
She turned around and faced me. As reluctant as I was to say anything, I knew the moment for total honesty had come. And besides, here we were, in Los Angeles, where everything could be examined and properly studied.
‘I have a headache.’
My mum and I walked down a long corridor of doors, identical except for the complicated arrangement of words on the front of each one, describing various medical specialties that made no sense to my eleven-year-old brain. Eventually we came to Dr Alfiderez’s small office, its walls filled with thank-you cards from patients and academic certificates, each one reassuring me of his capabilities. Dr Alfiderez greeted us – a cheerful man with a gentle smile – and offered us a seat.
Like so many medical conversations, most of what he said was incomprehensible to me. It was mostly meant for my mum. Afterwards, he attempted to explain things to me, diluting and distilling the details to convey only the necessary information. Even so, it was a jumble of sounds and the doctor’s accompanying drawings, which were meant to help, really didn’t. They seemed like nonsensical doodles. His drawing of the human heart was unrecognizable from what I thought hearts looked like. This only added to my confusion. Why was my heart was being discussed in the first place?
I began to zone out of the conversation, distracted by his array of thank-you cards, when I heard one sentence:
‘We need to do it now,’ Dr Alfiderez said to Mum. ‘If the water causes the brain to sag any more, she may become paralysed. Her brain is already lower than it should be, and it could weigh on the spinal cord.’
Paralysis? This was new. I knew what this word meant from previous experiences in the hospital as a little girl. Being in close proximity to paralysed children was always sobering, a reminder that despite my complex conditions, my ability to move was one that I could be grateful for. And that my body, despite all its flaws, still kept me alive.
It occurred to me – and bothered me – that in all the multitude of scans of my head that had been taken throughout my childhood, and recently, the position of my brain had never been described as ‘low’.
Couldn’t they build a shelf inside my head to stop it from sagging?
‘Why has no one ever told me my brain was sagging?’ I cried out, suddenly. ‘You’ve operated enough times – why haven’t you moved my brain upwards to stop it sagging? I can’t be fucking paralysed!’
Mum gasped. ‘Where on earth did you learn that word!’
‘Mum, we have bigger worries than me swearing right now.’
‘Don’t swear!’ she continued. ‘It’s not ladylike!’
Ladylike? Having been brought up in a culture where being docile and gentle was paramount to being feminine, my mum often found me lacking in this regard – despite her own headstrong nature. It was one of many battles that I’d had with her throughout my childhood.
Was being ladylike really important in the context of such a life-altering conversation? Over the years our arguments had grown in both volume and number, often leaving my father in the position of having to be the peacemaker. He was always calm and collected, in contrast to Mum’s hotheadedness.
Nothing had ever made me as mad as this sagging brain conversation, though. The news radicalized me. I badgered Dr Alfiderez with questions, interrupting him and my mum repeatedly as they fumbled to find answers. Eventually I was ushered out of the room to avoid being further upset and causing myself ‘unnecessary worry’.
With the slam of the doctor’s office door behind me, a nurse appeared, as if by magic, and persuaded me to have another MRI scan. It was while I was lying in that awful empty chamber again that I began to see how little in my life I could actually control. All I had done was confess that I had a headache, and then, when the doctor had nudged me, that I had four or five of them a week, sometimes more.
‘But that’s not supposed to happen,’ he’d said. ‘That’s not normal.’ This led to the sagging brain explanation, the mention of paralysis… and just as I’d tried to deal with this revelation, I was removed from all decision-making and any further critical information was kept from me.
It was an effort to spare me the pain, but also the truth. The doctor and Mum shifted immediately into the PG, child-friendly version of what was going to happen to me. Shunts would be called tubes, migraines would be euphemized to headaches, and every gory and unpleasant detail would be wiped away to twist the true nature of events into an exciting new adventure.
I was told that a positive attitude was everything. I knew instinctively that I had to play along, because fighting, crying and objecting had no place in a ‘serious situation’.
There was no choice, no control. I had to give up.
The MRI was followed by another visit with Dr Alfiderez. ‘There is too much water in your head,’ he said in a gentle voice, ‘so we are going to put a metal valve around your tube to control it.’
He demonstrated how the valve would work, his hand encasing a straw, which served as a model of my tube. His hand squeezed the straw tighter, showing how the valve would control the flow of water from my brain. When I needed less water, the valve would tighten. When I needed more, it would open wider, which Dr Alfiderez demonstrated by relaxing his grip.
Then he dropped another bomb. ‘There are also a number of tubes still in your tummy from your last operations,’ he said, ‘so we thought we would go in and tidy things up in there.’
Was there a part of my body that didn’t need surgery?
To be perfectly honest, what bothered me most at this point was missing out on the trip to France. There I was, just hours from getting on the plane to London, having almost convinced Mum that I was well enough to take a holiday with Annabel, and then due to my own stupidity in confessing another headache, I was stuck in California, stuck at the hospital, and facing another surgery.
I tried to take it all back.
‘But I don’t even have a headache any more. It’s totally gone. Isn’t that weird? Must’ve been a passing thing. See – told you there was nothing to worry about.’
Despite all the drama classes that I’d taken as a girl, I wasn’t exactly an award-winning actress. This scene convinced nobody. I began to cry as I started to think about another recovery process. I had just gone through one that was painful and excruciating. I had just gotten to the point where the pain across my stomach wasn’t constant. To go backwards, and return to the land of pain, felt cruel. Realizing this, I was seized with a sudden resistance.
‘I’m not doing it. I won’t! I can’t! No!’
Both Dr Alfiderez and my mum cajoled me. It was just a simple procedure, they said, and afterwards I wouldn’t have headaches any more and everything could go back to ‘normal’. After eight surgeries now, and eleven years of living with pain, I didn’t believe them.
The recovery time would be only three days, Dr Alfiderez told me. I would be home in time to enjoy my half-term in England.
‘Three days? You promise?’
‘Three days. That’s a promise.’
Everyone but me knew the truth: nobody recovers from brain surgery in three days. Their lies were supposed to help me muster the courage to face the operating room again.
Three days…
I guess I could do that.
But a piece of metal was being put in my brain? Dr Alfiderez assured me that only a quarter of my hair would be shaved in preparation for surgery.
‘What? Don’t you dare!’ I cried out before I could control myself. ‘You are going to have to leave me looking normal, otherwise you aren’t doing it.’
His voice was inordinately calm. ‘Michelle, this is important. The hair will be shaved near the bottom of your hairline, where it will be easily hidden. And besides, you are so beautiful, a bit of missing hair won’t make a difference.’
‘Leave a layer of hair to cover the stitches,’ I bargained. ‘I need to look normal. I am not going back to school looking like a freak with a half-shaved head. Otherwise, I refuse to have surgery.’
‘OK,’ he said. ‘I am not a hairdresser but I will see what I can do.’
‘I want a promise…’
Embarrassed, my mum interrupted. ‘Michelle, stop this. It’s good enough, Dr Alfiderez is very busy and all anybody can do is their best.’
You’d think my mum would understand – a shaved head is not ladylike, after all.
*
Before I knew it, with Pogo in hand, I was being wheeled into surgery again. Pogo kept me from facing what I knew to be true: that everybody goes into surgery alone. My mum would say goodbye, but Pogo was never taken from me.
The corridors were endless. My gurney rolled along, my charts were passed over my head, and I met one nurse after another, each of them using intimidatingly long words, and then, with the swing of the operating room door, a cold breeze hit my face. But this time, instead of the icy-white desolate room I was accustomed to, something was different. The operating room had fish and unicorns painted on the wall.
It was an operating room for children. It seemed horrific to me – and not a comfort. All these sweet animals dancing on the wall of a room where children come to die. A nurse asked me if I was OK in an overly positive manner, robotically, as if she had uttered the same sentence multiple times that hour already.
There was no correct answer, so I just mumbled, finding it hard to catch my breath because I was worrying so much.
‘We look forward to welcoming you back in a couple of hours,’ the nurse continued. ‘For now, just relax.’ She acted like I was simply boarding a plane, as if I was going to take a magical journey. More lies.
I closed my eyes.
I had never liked getting anaesthesia through a mask. It made me feel like I was suffocating. So it had been a relief to be told I’d be having an injection instead.
But when I opened my eyes, a mask was quickly approaching my face.
I began to shake my head away, trying to refuse it.
‘Don’t worry,’ the anaesthesiologist said. ‘It smells really good – and tastes like bananas.’
I hated bananas. The mere whiff of banana smell had once actually made me vomit. It was the one food that could instantaneously induce a gag reflex in my throat. With my hands strapped to either side of me, like a prisoner, I angled my head away from the foul fruity smell.
A pair of hands held either side of my face, while another person placed the mask over my mouth. The smell of bananas enveloped me. I cannot begin to describe how truly sickening this was. Feeling more and more suffocated, I began to breathe faster and faster.
‘Breathe slowly,’ a voice said.
I wanted to fight it but the gas had already affected me. I began my usual mantra of happy thoughts, making myself think of unicorns and fairies, unicorns and fairies, let’s think about a princess…
Thinking positive things just before surgery would keep me alive, or so I believed. Although I could never factually prove it, and never tested not doing it, I was convinced my faith in happy thoughts had worked for me all those other times. And it gave me something to do as I drifted off. It was certainly better than thinking about the pain I would have when I woke up, or how much I really wanted my mum, or my dad, whom I hadn’t seen in two months.
Princesses, unicorns, fairies… Many times in my life since, my friends have told me I live in a fairytale world – that I am overly trusting and positive, to the point of being gullible. And perhaps this is why. Rather than an ordinary childhood in which I could dream about Prince Charming or luxuriate in a fear of boys giving me lurgies, I got this. Hospitals. Masks being put over my face. Tubes and needles. But there’s a miraculous benefit to having to face adversity: you learn how to believe whatever you want to believe. The childhood that I created for myself was sweet and cartoonish. I wanted that so badly – and held onto that dream tightly until it became real.
*
Waking up in the children’s intensive care ward, I had the familiar feeling of grogginess. Looking over, I saw my mum asleep next to me.
Everyone used to say I was so strong. Well, it wasn’t me – it was my parents. How much easier their life would have been if I’d never been born. It was hard to wallow in self-pity when I thought about all the stress they’d been through. And my brother – how much happier he would be if I hadn’t come along when he was less than a year old and sucked up all the family’s energy and attention with my ongoing medical problems. Or even my sister, technically my half-sister, my dad’s daughter from a previous marriage, had I taken away the attention from her too? If anyone in my family was suffering, I would willingly take away all their pain in an instant, but I couldn’t. Instead, I was the one inflicting it.
My dry throat started to itch as I wheezed. I asked the nurse for water, awakening Mum.
‘Are you OK?’ she asked immediately, then launched into rapid-fire questions.
‘How are you doing? Are you in pain? Do you need anything?’
I turned to look at her and felt a wound at the back of my head, a sensation I had never felt before. There was stinging, combined with the prickling of the stitches, surrounded by a dull ache that made it hard to think or keep one train of thought going. The pit of my stomach began filling with dread as I wondered how much of my hair had been shaved off. I was still drowsy, still under the influence of the anaesthesia, nodding in and out. Hours merged together. The lack of external light or access to a window, or view to the outside, warped my perception of time. I was not allowed to eat. As I woke up, I felt myself growing weaker and weaker. My mum was in a reverse gear: as I grew more tired, she moved faster and faster around me, becoming more persistent in her inquiries about my welfare.