I’ll never know the point where my physical illness gave way to something different, something more complex, but more and more I think now that hunger was always with me, always gnawing away somewhere in me, and my illness just allowed this hunger to assert itself in the only way that could possibly have been acceptable to me. I couldn’t see myself as one of those women – I thought that eating disorders only happen to women who are vain and selfish, shallow and somehow stupid; it took me years to realise that the very opposite is true, that these diseases affect people, men and women both, who think too much and feel too keenly, who give too much of themselves to other people. I knew I wasn’t vain, I wasn’t selfish; but I have always felt vaguely, indeterminately sad, too vulnerable to being hurt, too empathic and too open, too demanding and determined in the standards that I set for myself and my life. This was always the case, although my disorder has certainly sharpened these traits. Sometimes I think that my physical illness, together with my personality, the length of time it took for the doctor to find a diagnosis while my body and brain adapted to malnutrition, were all together a perfect storm that broke, at some point in time that I’ll never quite pinpoint, and left this devastation in its wake.
I’ll never know, that is, where and when the ground shifted, and yet I can pin down the moment I first realised that I needed to be well. In the preceding months, a summer I remember as so brightly lit that my pale skin almost fluoresced, now that I was finally freed from feeling cold to my bones and had exposed my limbs at last to the warm air, a friend repeatedly told me stories about an anorexic girl she’d been to school with, who’d eaten sushi from a garbage bin and whose heart had given way. I’d pretended I didn’t know why she was telling me this. Two of my scruffy scientist friends, who worked at the university near my house, had visited me in their lunch break on a day when I was working from home and tried to take me to a medical centre where they’d pre-emptively made an appointment. I’d refused, insisted everything was fine, had drunk a sugar-free soft drink even though I had no physical reason to avoid the regular variety, and delayed my meagre lunch until they left. In the preceding months, my housemates had asked me to put them into contact with my parents, insisting as we sat together on the steep wooden stairs of our terrace. I’d agreed, but I never followed through. I had received a long-distance phone call from a friend living in China who’d been shocked by my recent photos on Facebook, and I told him that I was just working too hard. I said that I was stressed, that I was tired, that I had a lot to do, but everything otherwise was fine. I kept busy, ceaselessly busy, going out almost every night to drink with friends and watch on when they ordered dinner, telling stories and talking constantly as they ate, but never taking my eyes off their utensils. I hardly slept, and often walked, almost unconsciously, to the fridge at night, stealing the vegetables from my housemate’s boxed-up leftovers and drinking litres of tastelessly dilute cordial straight from the bottle, trying to stave off my hunger with liquid.
In the preceding months I’d been heartbroken, time and again, by all of this concern that I was sure was misdirected. I felt so sorry for my friends, that they should be so worried for what I truly felt was no good reason. I was sad for their distress, that is, but never once felt my own.
On the evening that I first realised that I needed to be well, I was stopped at a red light on Fairfield Road, it was late and there were no other cars in sight. I was heading east, back home to the inner west, after visiting my family for a dinner where I’d been unable to sit still, where I’d steamed myself some vegetables rather than share their barbecue, where I’d felt I watched the whole evening as if from the wings of a stage, everything disconnected, too flattened and foreshortened, to feel real. The evening had crawled past – hunger stretches time; in this, it is like any kind of waiting. I was exhausted. I was sobbing in the front seat of my idling car and I knew that I couldn’t go on, not like this. It still feels strange to me that my tipping point, the moment it all became unbearable, was so mundane.
But more and more now I think that these things work by a slow accretion. In the same way that my hunger crept up, inch by inch, on me, each tiny change so unexceptional and unremarkable that it could go almost unnoticed until I’d cut all but a handful of ingredients from my diet, so too did it slowly become intolerable. So is the process of recovering, of change, so piecemeal and fragmented that it’s sometimes hard to recognise that it is happening at all.
After this evening, I asked a friend for the phone number of the psychologist who had helped her with her own anxiety. I perched on the very edge of the hard brown couch in the appointment and talked about feeling frantic, but kept zoning out to watch a leathery man in a stretched grey singlet prune back the flowering vines on the balcony of the next building. It was a month before I told my family about these appointments (my mother almost cried with relief), several more before the psychologist convinced me to attend the eating disorders clinic in the psychiatric ward of my local hospital. It was more than two years before I recognised my condition as anorexia.
In this time too, I barely noticed the small changes that were unfolding, the firmly held beliefs about who I was, how I felt and how I ate, slowly shaking loose within my mind. Each victory was so tiny, often so partial or unabsolute, so easily lost against the background of how many more things needed to shift, that it was impossible to track them or to ever pin them down.
The horrible irony is that eating disorders only happen to people who like definition and delineation, who like clarity and knowing where they stand, so part of the process of moving past the illness is to learn that recovering can only ever be undefined, slow and without schedule, and riddled with mistakes and mess and temporary measures. We have to stop trying to recover perfectly, that is, in order to recover at all.
These are the metaphors that were repeated in the hospital. It’s like learning to drive a car. It’s like breaking up with an abusive partner. Like any kind of drug addiction. Like a path you’ve worn into the grass. Paddling a canoe against the current. Think of visitors to a house. It’s ripping off a band-aid. Living with a broken leg. It’s background noise. A CD jammed on a track. A frog in a pot. A cork in a bottle. A secret world. A safety net. A parasite, a function, a friend.
More frequently I think now that our minds aren’t any different from our bodies, in the ways that they replace themselves and change: something like sixty billion of our cells die off each day, and like this our entire physical selves are replaced every seven years. In between, we never know which parts are new and fresh, which are decaying, which will be the next to die. Our minds shift like this too, and it’s hard to write, to map, what happened and is still happening, to chart the things I did and said and felt when I’m still not sure what any of it means. Or if I ever will, or should even try to, find that certainty.
Because this isn’t a narrative of sudden healing, of epiphany or of discovery, not for me, or for any of the other unwell women and men I met through hospitals, or friends-of-friends, or advocacy, we’ll all be sorting through it for a long time yet. I’m not sure that there can be a narrative about potentiality, provisionality, for what it means to try to change.
One of my friends from hospital, a bubbly and huge-hearted woman a few years older than me, tells me that she’s treating her recovery as an experiment: if she decides later on that her bulimia was better than whatever the other side holds she can always go back, but she’s giving it her all in the meantime. Another, an acerbic but nervy trainee nurse, says she chooses which battles to fight on any given day, which days it’s better to just hold on. One woman, who was in her first year of a media degree when we met in my second admission, and reminded me then so much of my own nineteen-year-old self, has regular Fear Food Fridays, where she ate something that terrified her while watching a horror movie on her couch. She had bought herself stamped metal cutlery that read ‘Calories don’t count on this spoon’ and ‘Knife in shining armour’.
I know that at first, at least, I was braver when I was with these women, that when we ate together in hospital it seemed easier, sometimes, because we all knew that we all found it difficult and horribly strange. I still watch undiseased eaters having dinner and wonder at their thoughtlessness, their ease. Another of these women has a vegetarian boyfriend who eats a steak whenever she tries something challenging and new.
My doctors never tire of telling me that we’re the unlucky ones. That in almost every other mental illness, treating the symptoms makes the patient feel better, even if only in increments. That depression lifts a little, the anxious find moments of calm. But for us, when we start to eat again, doing something that distresses us six times a day, each and every day, something that our every instinct still screams against, all of the smaller hungers that our one great physical hunger has damped down, for all those years, rear up. We feel worse, far worse, when we don’t have our hunger to protect us. I never thought that I would feel as much – sweeping sadness, flashes of embarrassment that make me nauseous, unbridled fury, even something I didn’t recognise, at first, as loneliness – and to feel as often as I do now that I’m without my hunger. Hunger suppresses the emotions – and this is often part of its appeal – because it is impossible to get riled up about anything when your body is diverting all the energy it can muster on simply trying to stay alive.
Shortly after my first hospital admission, I started reading medical books and cultural histories of hunger. I was trying to understand this deeper, more complicated side of my illness that I’d been unable, for so long, to recognise within myself, to know its face and shape as if that alone could pull me clear. I learned that when ‘hysterical anorexia’, as the condition was originally named, was first described medically, it was considered a perversion of the will, and treatment was commensurately harsh. Patients were forcibly removed from their families – in what was known, rather wonderfully, as a ‘parentectomy’ – usually to a convent or farm. Force-feeding was both common and primitive, often resulting in broken teeth and torn oesophaguses; and many patients were bound to their beds. Even in the early twentieth century, anorexia was considered a neurotic denial of adulthood and sexuality, and treatment involved taking frequent vaginal swabs to assess the ‘vitality’ of its fluids, alongside injections of stimulating sex hormones, at a time when the patients’ higher cognitive functions were compromised by malnutrition, and they were surrounded almost exclusively by male physicians and psychiatrists. In the fifties and sixties, patients were kept heavily sedated, often for years. In Australia, at the moment, no state has more than about eight public hospital beds for adult eating disorder patients; these beds are all in locked psychiatric wards, the waiting lists are often up to thirty-six weeks long and only available to the critically underweight and medically imperiled. I had to fight, and fight hard, to get the treatment that I needed, and I had to learn as I went, by trial and sometimes damaging error, precisely what that treatment might be. My physical condition complicates the usual treatments for anorexia: often, when I’ve tried to eat a food that I’m afraid of as an exercise in exposure, I’ve been unable to keep it down and become even more fearful as a result. I physically struggle, too, with the full-sized meals that are a part of any prescribed meal plan. And yet I know I’m not unlucky, in comparison with what has gone before.
Modern medicine still doesn’t understand the pathology of anorexia, what causes any one person to turn their hunger inward while another remains untouched. Genetics plays a role, and personality; power plays a role, and so do sexuality and family and a whole range of emotions and emotional responses. So too can trauma, and striving, belonging, acceptance, acceptability and self-esteem. All of these smaller, unbearable hungers that are starved away or diminished, when the body is kept unfed.
But however similar we become as we shrink away from ourselves and from the world, the specificity of these diseases confounds me still. In the hospital, I met a springy-haired woman who was studying medicine and found that she focussed better on the slightly manic energy that comes with mild starvation. Another, dimpled and defiant, had grown up in foster care, and learnt that if she stopped eating in a house she didn’t like, she would have to be moved elsewhere. Her best friend from university, who had started with a celebrity diet and liked the results a bit too much: this woman was terrified by the idea of eating a banana, but would happily have a chocolate bar, whereas another thought dairy foods were all unnecessary and unnatural. Some of us were horrified by carbohydrates, others by sugar, others by adding oil to a pan – often depending on which nutritional craze had been most prominent when we each first became ill. Other fears were harder to determine in their origin, but equally irrational: red meat but not chicken, muffins but not cakes, rice except in sushi. One woman, who’d told her workplace she was in Fiji and not in hospital, considered pineapples too high in energy to eat. I’ve been terrified, by turns, of apples, eggplant, tofu, melted cheese. There’s a specificity to these symptoms, to these fears, against which all of the theorising and rationalising, all of the thinking and writing that I do falls down entirely.
Yet in the early weeks of my first hospital admission – which took place almost three years after that evening of sobbing over my steering wheel – I realised that the first thing that we were being given was a language. In some ways it is a jargon, that kind of language that speaks only to the initiated, that carries with it its own definition of inclusion: there are terms and phrases like ‘safe food,’ ‘self-compassion’, ‘replacing’; even ‘recovery’ that only a patient, former or otherwise, will use. We learnt to speak about ‘symptoms’ and ‘behaviours’, rather than about the things we’d done and the mistakes we’d made. About ‘urges’ and ‘distress’ as if they were distanced and defined things, specific and somehow separable from our interior lives. We were told to speak about ‘energy density’; about ‘normal’ rather than full-cream milk, ‘fun food’ rather than junk. I was expected to learn not to undercut the things I said by making jokes at the end.
We learnt a language, that is, that had our selves removed from it, a language for all of the things we’d spent years keeping unspoken and hidden away. It gave us a direct way of addressing our disease, and a distanced stance away from it; a way to stand outside of it, and stare at it, and make it other. A language to cut ourselves clear. But I still don’t know how to write about what it means to get better. Even with a language, provisional as it is, I’m not sure that there can ever be a form that might contain so slippery and fragmentary a process.
My first admission, in a day program, was not physically easy. I struggled terribly – as did the doctors – with the physical symptoms of my disease: I threw up most of the prescribed meals directly onto the table (the bathrooms were, of course, locked). The woman who sat opposite me at meal times took to leaping backwards in her seat whenever I moved suddenly. I skipped breakfasts at home because I knew how much I’d have to eat at the hospital throughout the day. I was so unused to eating snacks that I thought two strawberries would be sufficient to count as morning tea. I had horrible headaches, my stomach distended, my breasts and legs ached, and I’ve never felt so tired in my life. I lost weight, even though the whole program was geared towards what we were told to call ‘weight restoration’ rather than ‘weight gain’.
In the first weeks, I tried to chat at the meal table, telling stories with accompanying wild hand gestures because the silence was unsettling and painfully artificial. I introduced myself over-brightly on the first morning, even though no one there was able to respond in kind. I was bewildered; and I kept trying to normalise the very strange circumstances we’d found ourselves in, to thicken my skin where it threatened to break. I lost weight again – two hundred grams, I later found out – and was forced to leave the program for a week.
I was terrified. I was being questioned by the doctors about the way I spoke, the way I laughed, the clothes I wore, rather than the only thing that I’d seen as being problematic, the way I ate. The stories that I’d told myself about who I was, what my condition meant, how I really thought and felt, were being pulled apart or dismissed outright; I wanted so much to get better but was so terribly afraid, still unable to let go of the foundation that my hunger gave me. I lost my own belief in the face I’d always shown the world; I still think, sometimes, that I haven’t yet got it back.
In the week that I was forced out of the program, I ate cake every day, determined to gain weight by any means. A chocolate lemon meringue that my mother had made from her new cookbook, a pear and Callebaut chocolate tart from Black Star Pastry, a brandied prune and vanilla torte from Bourke St Bakery, a brownie from the café near my house in which I did most of my writing. A baked ricotta cheesecake from Papa’s Patisserie in Haberfield, the sticky date pudding I’m famous for amongst my friends. I would stop and ask to take the rest away as soon as I felt my stomach muscles flensing. I cried a lot. ‘You’re living my dream,’ the dietician said. I smiled, though I wanted to slap her, and hard.
I was put on supplements, small bottles of almost viscous milk with a chalky aftertaste barely disguised by their purported flavours. Each bottle contained the equivalent energy of a small meal, and I was able to keep them down; I was drinking, most days, four of these each day, on top of the regimented three meals, three snacks, three hours apart, that I’m still following, even now. And my body did recover, but I left the hospital, that first time, feeling like my mind had been left far behind.
On the day I was discharged, I spent the morning group session sobbing on the couch, because I so desperately wanted to stay, I was so uncertain of myself and my ability to hold steady on my own. I gathered, that night, a group of friends at a Newtown bar, knowing they’d all insist on buying me celebration drinks. I wore a new dress that I’d bought because its plunging neckline showed off the area where most of my new weight had settled. Nobody wanted to order dinner, because the place I’d chosen wasn’t cheap, and I didn’t want to do it on my own, so I sat there, and chewed on the limes in my drink, and I swore, over and over, that I’d never go back to hospital again.
I started in a new job. A new housemate moved in. I bought new clothes, and realised that the things I instinctively picked off the shelves – full skirts, shift dresses, pleated embellishments – were things that had suited my underweight frame, but looked strange and lumpish on me now. I went to yoga classes, and couldn’t bend and reach in the way I was used to. I kept trying to eat new things but I kept making small concessions too, and within months, I was living off steamed vegetables again. But this time I knew the face of my disease, this time I knew that what I was doing was madness, was destruction, was obscene, this time I was pushing, and pushing hard, towards annihilation. I never thought that I would feel so much and so often without my hunger, and I didn’t know how else to cope.
By the time I went back to the hospital for a second admission, almost all of the other women who had been contained there with me had already been back, and one had been admitted as an in-patient to an expensive private clinic, often the only option for people whom the underfunded public system can’t accept or accommodate. I’d completed an online follow-up survey of psychometric measures and been startled by my poor results, then gone straight to a bar with some friends, sucking back cocktails and swearing that I’d never go back, that I couldn’t. But by the time I went back to the hospital I had spent six weeks trying to prove myself to the program directors, keeping meticulous food and exercise diaries, having blood tests and being weighed weekly. I’d stopped working and I’d spent another birthday unable to eat a slice of my own cake.
I thought I’d be unshockable in my second admission, because I knew what was going to be demanded of me and I knew I wouldn’t like it, but at least I’d be prepared. I felt a deep sadness every time I finished a meal, rather than a blinding panic when I sat down at the table. I swallowed my own vomit under threat of being forced to leave the program and sat for hours with the taste in the back of my throat. I learnt that if I spoke harshly, self-punitively about my slip-ups and ‘behaviours’, the psychologists wouldn’t reprimand me and I could all but get away with skipping meals, or parts of meals, or choosing only options that didn’t cause me fear. I ran baths every evening and watched my body breathing, softening under the warm water, and I cried in great shuddering sighs while my housemates watched TV in the next room.
In my second admission to the hospital, we went on an outing to a chocolate café that I’d visited several times, over the years, with the same group of friends, stirring saccharine into my coffee while they’d eaten doughnuts dipped in chocolate sauce or brownies that slowly puddled up their ice-cream. I stared down at my cake and couldn’t stop thinking about everything that may always have been possible, when I’d been so deeply convinced otherwise, everything I’d been too scared to do. Everything I’d lost over the decade of my disease.
I’ve been admitted elsewhere since then, worked individually with psychologists and dietitians of my own, sometimes having appointments on four days in the week, still with no end in sight. I never can know how long I’ll need this kind of support, which things will shift or stick or change, and when; only that the important changes are always things I do not recognise when they occur.
More and more I can’t believe that I thought I ever would be able to understand exactly what it was that I had been through, ever be able to find a way to pin the experience down when what I think about it changes every time I hold it up to scrutiny. Because the brain physically changes, too, with hunger; like the body, it narrows and sharpens and grows harder, shuts down all the areas that aren’t essential for survival. So too as the body recovers does it reshape itself: the brain is physically repatterned as we change the ways we act and eat.
I’ve been obsessed, lately, with reading about the brain, and the ways in which it hungers. In the first hospital, one of the psychologists was researching ways of mapping and re-mediating the starving brain, using functional MRI scans to chart which areas become active when eating-disordered patients are shown images of food, or asked to read out lists of words, when every now and then these words are interspersed with something non-benign: a word like ice-cream, restaurant, sugar, kilojoule, oil. In America, psychologists have used the same techniques to try to understand how a hungry brain reacts to the act of eating itself, and have found that while a healthy brain responds to food with activity along a circuit that registers pleasure, then safety and contentment – it tastes good, it is good, I am good – an anorectic brain doesn’t register pleasure when eating at all, so the entire circuit is confused. The brain cannot decide if the food is good or dangerous, if the body is safe or at some uncertain kind of risk. There’s no release of the reward chemicals, dopamine and serotonin, no cognitive reward for eating at all.
Other researchers have found that anorectic brains have stronger mechanisms for impulse control and for working memory, but poorly-functioning circuits for body awareness, for the recognition of physical pain – including pangs of hunger. I recognise all of this. I can remember making my way, in the first weeks of my second admission, to a lazily-late weekend breakfast with friends, with a strange feeling in my stomach, not quite nauseous, not quite anxious, but somehow close to both, and that it took me several minutes to realise I was hungry. I still lose interest in my meals long before I’ve eaten an appropriate amount, they still don’t give me pleasure, by and large. On the other hand, my working memory for food is acute: I can still account for every single thing I’ve eaten over the last few days, the number of chips I may have grabbed at a party, the pieces of cheese I’ve picked from a platter.
But all of this understanding falls down in the face of the specifics of my disease: it cannot help me when I’m sitting at a restaurant table surrounded by the serving plates of a shared banquet, it cannot help me when I’m desperately trying to breathe through the spasming of my oesophageal sphincter, when I’m reading a café menu and can’t trust my own instincts or lack of desire.
I can’t write easily about recovering because I vacillate, each day, between knowing that it’s possible, and thinking that I’m not up to the task, or that my physical condition will always hold me back. I’ve lived for so long with my hunger, through my hunger, that my imagination fails sometimes, when I try to think of how things might be different.
When I first started writing this essay, almost six months after my second admission, I found myself driving back home after another extended dinner with my family – which now includes an additional two nieces, and my sister’s partner – along the same roads, almost empty and lined with sleepy fibro houses, spilling coloured light from their TVs onto their front lawns. I’d pulled the roast chicken meat off the bones and shredded it, flipped it underneath the leafy vegetables I’d left on my plate; and I had been relieved when my sister-in-law brought along six ramekins of dessert, even though we were seven adults there. I found myself sobbing again at the traffic lights, gulping in air, and I thought, again, that I couldn’t go on like this, even as I knew that I had no choice. This happens often, these moments of exhaustion and despair, and to all of the other patients I have spoken to. There’s no room in any narrative of recovery I’ve ever seen for this terrible sadness, this unreasonable fear, and these unmeasurable movements, backwards and forwards and sideways, towards, away from and around whatever a return to health might mean.
One of the most profound changes in an anorectic brain is a rigidity in thinking, an inability to adapt cognitively to sudden changes, to let go of small details that don’t matter; and it’s certainly evident in the way that we eat, or think about eating. At my sickest I used to sit at the same place at my dining table for every meal, at the same times every day, using the same single set of cutlery, to know by rote the quantities before me, ten beans, three slices of tomato. I’d plan my meals hours in advance, prepare them carefully and slowly, and I still miss this focus sometimes. I miss its simplicity, how the physical world becomes heavier, almost, and everything else falls away; how the immediacy of that physical hunger, the continual tiny distractions it enforces on the body and the brain, subsumes and consumes everything greater: sadness, disappointment, uncertainty, fear.
Now I think that it’s the little things, the details, that will bring me through and cut me clear. The way I haven’t felt the burn of chilblains on my toes this winter. The way the saltiness of butter can bite through the thick, sharp sweetness of a piece of good fruit toast. The ability to read a book over one full day and not be made to lose focus by my anxious body. To be able to feel time just slip away, rather than congeal into long minutes of waiting for the next meal. The single days, the single meals, the tiny victories that are all the increments of change.
In recent months, I’ve met, for the first time, three women who are able to talk about their hunger in the past tense. I’ve been stunned, each time, by how normal, how unmarked they each seemed. They are all vivacious and delightfully quirky women, a writer, a designer and a lawyer, respectively. One has a healthy adolescent daughter of her own; she ordered toast when we met in a café, so that I wouldn’t have to eat my morning tea alone, but this was the only hint I had, a hint only visible to the initiated, that she had ever been unwell. One of my friends from hospital refers to these people, fully recovered, as ‘unicorns’, because they seem like mythical beasts, so often talked about, even if few – if any – of us have ever seen them. Directly or indirectly, I’ve asked each of them how they were able to pull themselves clear. None of them knew; years later, the processes are unfathomable even to them. They still can’t name exactly what it was that changed. Perhaps it is this that might give me hope. That something might be happening, in increments, that is outside my knowledge, outside narrative or explanation, even outside any language I might use to try and pin it down.