The World Was Whole

by Fiona Wright

  Sylvia Plath writes, ‘I stalk like a rook / brooding as the winter night comes on.’

  I go to a seminar at my university about screen adaptation, and one of the first presenters is a man I met last year, at a festival with Alex, where Alex won two prizes for his work – this man remembers me immediately, it takes me a few more seconds to catch up. The seminar is challenging, and hugely exciting to me and as I drive home along the freeway I can almost feel the electricity snapping in my brain. I want to tell Alex all about this; Alex is the only person who I cannot tell about this.

  I go instead to a bar that evening with a friend and knock back strong gin cocktails; a man comes to sit beside us, and I let him, because I am a woman and because I can’t help but be nice. He talks about poker and how he likes our hair, and when I try to change the subject, resume my conversation with my friend, he interrupts me; and when my friend runs out of patience and asks him to leave, he snaps immediately to anger, saying, I won’t take cheek from a bitch like you, and, you are both half-psycho.

  I wrap my coat around me as I walk home, cheeks stinging in the wind.

  A GRAVITY PROBLEM

  In January last year I attended three funerals in as many weeks: two for elderly women, one for a man incredibly, unbearably young. One was held in a Catholic church near Kogarah, its altar still bearing a nativity scene, oversized baubles still decorating the ends of each pew; I sat next to Laura and Dan, both of whom were raised Catholic, both of whom surprised me when we entered the building by dipping their fingers into the holy water by the door and crossing them over their bodies, by genuflecting (although I didn’t learn that word until much later) towards the altar as we left. Another was held outdoors, and I stood behind two teenage girls with small constellations of pimples across their upper backs, one with a soft rayon yoke on her dress, which fell like wings along the length of each shoulderblade. At funerals, and at weddings too, there’s a small and terrible part of me that can’t help but imagine myself involved in each ritual, even though I’ve no intention of ever marrying (or dying for that matter) even though it always feels like misappropriation. I’m not sure if this is natural, or if it’s just a kind of empathy; I always fear it’s narcissistic.

  At the first funeral, most of these rituals – the call-and-response prayers, the incense, the scriptures – were completely unfamiliar to me, the unbelieving child of two children of atheists (although I do have a strong memory of keeping a diary, as a seven- or eight-year-old, listing my bad deeds and my attempts to recompense them; I know I thought of this because one of my school friends was preparing for her first communion and had told me something of it, but it startles me now as an awful precursor, this need to keep accounts, to improve my self, to find a way to be measurably good). At the second, the funeral for the young man, I was startled by the celebrant, a tall woman in a colourful summer dress, who mostly spoke bluntly and pragmatically, but who finally said to the congregation, this isn’t the life that you planned, but it’s the life that you have, and that is waiting for you. I wrote this down, and immediately felt embarrassed and awful for doing so.

  The phrase made me think of a friend of mine, a writer with a chronic illness, who once spoke on her podcast about feeling stalked by the woman she had planned to be, the woman she feels she could have been if she didn’t get ill, who she calls the ghost woman. The ghost woman she compares herself to, who she still thinks she might grow up into, who she cannot quite let go of, even though she knows this woman is nothing more than a phantom. Yes, I’d thought, that’s how it is for me.

  This last year has been the one in which I gave up on my own ghost woman, gave up on the life I planned, on all the rhetoric of recovery and its awful metaphors (the worst of which, I realise now, was the continual injunction to start living, rather than just existing, as if a life lived with an illness were no real life at all), that I’d been fighting for so furiously for a solid eight years, starting seven years after I first fell ill. It wasn’t a clean process, or a tidy one, and it was riddled with fear and anger and a suffocating grief. I’m not sure, either, that I have the language to explain it, or one with which I feel entirely comfortable – but I know that the shift has been helpful, and I know most profoundly that it has been a relief.

  I sometimes think that this is all that we can ever ask of suffering, that it somehow, sometimes be relieved.

  I’m not sure, either, exactly how this process began – just like falling ill, just like getting some measure of better, the changes were all so small and gradual that I didn’t really notice them until enough of them had accrued to tip the scales, so to speak. Perhaps it started after, or even in, my most recent hospitalisation, where I ‘went inpatient’ (as those of us who do this tend to say) for the first time – I was only able to bring myself to do this by remembering that it was the one kind of treatment (conventional, radical and experimental alike) that I had not yet tried. But inside the hospital I was continually frustrated by the group sessions where we were shown materials and given activities that I’d covered so many times before (and which had helped me already, they had, to think differently, be gentler, strive less, but not to eat more often or appropriately; in some cases we were given the exact same worksheets I’d filled in years ago and it felt like taking driving lessons even though I’d been on the road already for years). Inside that hospital I worked so hard to eat the set meals, often so afraid and anxious that my whole body hurt, but I was so frequently sick that I soon came to walk downstairs to the dining room already expecting to be throwing up minutes later. Even so, when I was discharged some weeks later, I still felt hopeful, still felt determined, certain that I’d be able to continue eating regularly at least, but by the new year, even this had gone to pieces, once again.

  Or perhaps this process started in the year preceding, where I’d taken part in two separate clinical trials with two very different approaches, both of which ended with me feeling like I was the datum that would mess up the researchers’ statistics. Or even in the months afterwards, when I read about a new and slightly different diagnosis, severe and enduring anorexia nervosa, a new (and not uncontroversial) categorisation only just starting to be given to patients who’ve been ill for seven years or more (seven years is widely considered the average time that recovering from an eating disorder takes; I’ve been ill for close to fifteen years now, although I can’t pinpoint with any accuracy the onset of my disease). I’m not completely sure I like the language of this diagnosis – most people with long-term eating disorders don’t remain severely underweight or unwell for years on end, the body is too resilient for this, but I’m heartened by how it seems to recognise that not everyone recovers from these illnesses, despite all of the specialists and therapists who constantly say, recovery is always possible, for all of you. (The people less likely to recover, research shows, are those who are adults at the onset of their disease, those who are sick for some time before they enter treatment, and those who have physical complications underlying their eating behaviour – people like me, that is, people with experiences like mine.) Or perhaps, even now, this shift was a question of metaphor – how I kept thinking that the language that we have for illness and its treatments is all so painful and punitive, that we talk so often of ‘fighting’ and ‘beating’ illness that we don’t have any other way of understanding an unwell body and how we might live within it. Our common conception of illness, according to Emily Martin, is one that sees ‘the body as a scene of total war between ruthless invaders and determined defenders’. These are the metaphors of immunologists, who accordingly speak of diseases and our bodily reactions alike, as ‘assaulting’, ‘attacking’, ‘striking’, ‘laying siege’. But our bodies are not battlefields; and what I’ve found injurious about these metaphors is that they imply that those of us who don’t get better, who don’t recover from our illnesses have somehow not fought hard enough or well enough, have been defeated, failed (this feels particularly cruel in anorexia, so often pred
icated on a fear of failure, on impossible striving in its stead). I thought like this for years – I won’t let this beat me, I’m fighting every day – and even now, can’t help but imagine, so pervasive is the metaphor, that the alternative is a surrender, or at best an attempt to call an uneasy armistice.

  What I do know is that I was growing frustrated with treatment, with constantly checking and monitoring my thinking, my eating, my emotions, and in so doing filtering everything that happened to me through whichever psychological framework my therapists and I were working with at that moment (almost all of which are spoken about in acronyms: CBT, DBT, ACT, IPT); and that I was exhausted. What I do know is that I realised that if I had been physically ill, if my disease was purely of the body, there’s no way I would have continued taking a medication for this long when it so clearly wasn’t working. When I finally said this, tearfully, awkwardly, feeling ungrateful, to my psychologist, she nodded calmly and said, I have sometimes wondered about the ethics of still taking your money, but in a way this came as no surprise. She had, in the last two or so years, persistently and always gently, brought up the idea of what she termed illness management, rather than recovery, and each time I’d told her, sobbing, that this just wasn’t an option, that I simply had to get better, I just had to. Each time I’d said, please don’t give up on me. Because this is always what it felt like: giving up.

  But here’s the thing: statistics show that around twelve million people in this country, in a population barely twice that, live with a chronic disease; mental health conditions are the second most prevalent of these. The idea of full and unimpeded health, a body or a brain that operates without impairment or obstruction, is for almost all of us at some point in our lives – if not across them entirely – a fallacy, but we do not apprehend or appreciate this until something goes wrong. For so long, though, I was entirely unable to imagine a life for myself in which I didn’t at some point become well – and even when I did finally start talking to my therapists about stepping back or stopping treatment, one of them mentioned that doing just that helps some people sometimes, and I couldn’t help but think, if momentarily, perhaps then this will be the thing that makes me better.

  I know that one of the reasons that it has been so hard to think of myself as someone chronically unwell is that I still don’t want to accept the limitations of my body, or the limitations that it might impress onto my life. That I’m still hoping, even as I recognise it as one of the great deceptions of my disease, that I might transcend my body and its weaknesses entirely.

  When I started talking about this to the people closest to me – to my parents, my friends, Alex, who I was still dating at the time – all of them were alarmed. I understood this, of course I did – I could barely talk about the matter, at first, without weeping; even now, I still sometimes well up. All of these people have seen me cycle, time and again, through getting a bit better, getting a bit sicker, getting a bit better again; they’ve all seen me struggle (again that awful metaphor) more often in the periods where I’ve not had professional support – over Christmas and the New Year, or when my therapists took other holidays. They all love me, and part of wishing me well is wishing that I were well, that I could be at ease within my body and the world. They were afraid, and worried for me; Laura once said, I hate thinking of you doing this entirely by yourself. It has been difficult to reassure them, especially as I’m not always entirely sure that I am reassured myself. It’s hard to articulate the difference, sometimes, between giving up on treatment and giving in to my disease.

  Still, what saddened me most during this process – and saddens me even now, if I am honest – is that stepping away from the idea of a solution, from the idea of a return to health, the restoration that the word ‘recovery’ implies, means that there’s so much else that I have to decide to leave behind. I have to leave behind the idea of myself as someone who loves travel and who might do so with the impunity and unequivocal excitement of my healthy friends, rather than limit the time I spend away and make sure that the places that I stay have enough cooking facilities that I don’t have to eat out when I can’t manage to do so. I have to leave behind the hope that I might go to long and lazy lunches, celebratory dinners, picnics (fucking picnics) and feel anywhere near as relaxed and expansive as such things are supposed to engender within us. I have to leave behind the vision of myself as someone spontaneous, who doesn’t need to think through plans (and changes to them) to ensure I’ll be able to find something unalarming to eat; and the desire that I have to be reliable, to not have to cancel engagements with friends because I’m tired and weak or so wrenchingly anxious that I can barely breathe. I have to leave behind the idea that I might leave behind my monthly visits to the GP; I’ve always said I don’t want children, but I’d still like to have the choice; and I know that as I grow older, I’ll have to reconcile myself to weakened organs and fractured bones. Before my recent hospitalisation, I wrote a list of all the things I wanted to be able to do, to carry with me in my notebook and remind me why I was there (Devonshire tea, it said, cake with Laura, ease at cheese night, and protect my nieces, to whom I’ve already given a genetic predisposition; I can’t bear the idea that they might also learn bad habits from me). All of these things, I have to reconcile, I will always live without; and so the process has been one of grieving, deeply grieving, for everything I’ve been hoping to one day do, and be.

  But here are the things that I did: I responded to a conference organiser’s request for dietary requirements by listing a few of the foods I cannot eat, instead of just ignoring it entirely, or writing

  ‘vegetarian’ (I’m not a vegetarian) and hoping for the best. I answered a travel agent’s enquiry – in the lead up to a trip to China – about existing health conditions honestly, including pointing out that the best thing to do if I’m unwell is to keep going without making any kind of fuss (I once had a restaurant owner try to call an ambulance when he found me vomiting in the laneway beside the building – the toilet had been occupied – because he couldn’t believe that something wasn’t terribly awry). I was invited to a pasta night by a new friend, and mentioned that I can’t eat pasta, rather than just rocking up with a salad and a smile. I ticked the box on the census form asking, albeit in fairly cagey language, if I live with disability, and it felt shocking to me, utterly transgressive, even as I knew it to be true.

  It was the language of this, I think, that felt so shocking: for a long time I didn’t feel comfortable with the idea that what I’ve always called ‘my illness’ might be (might be instead) my disability, because I was and am still able to operate my body, to physically move through the world, to push my body, even, or especially, when it aches or tires. I exercise almost every day (and it’s only part compulsion), I almost always walk wherever I need to go. I work. I don’t look sick, at least, not most of the time, not any more. All of these things, of course, are very much beside the point – and there’s no hierarchy on hindrance, as it were – but it’s still the wheelchair-bound stick figure on a public toilet door that I immediately think of when I hear the word ‘disabled.’

  And yet one of the questionnaires that I was asked to fill out every twenty-eight days across the eight years I was in active treatment measured what it termed ‘clinical impairment’ and asked, to what extent have your eating habits, or exercise, or feelings about your weight and shape made it difficult to concentrate, made you feel critical of yourself, stopped you from going out with others, interfered with meals with family and friends, made it difficult to eat out, made you upset, made you worry, made you feel guilty. On any one of these metrics I still score highly. Much more recently, when I was filling out other forms – those required to begin the process of registering my dog as an assistance animal – I came across this country’s legal definition of disability, which lists seven different delineations of the term. The last of these is ‘a disorder, illness or disease that affects a person’s thought processes…emotions or judgement’; an
d yes, I thought, that’s how it is for me.

  But on a day-to-day level, I’m still not certain how I feel about this term, I still fear, sometimes, that I may be usurping it from other people who need it more. More often, these days, I refer to my illness as a chronic one: chronic, from khronos, the Greek word for time, the endurance of severe and enduring anorexia nervosa. Khronos, also the name of the mythical Titan who swallowed his children whole, then vomited them back up again. (That’s how it is for me.)

  There’s another metaphor too that I’ve found helpful as an alternative, one that comes from design, a field I worked in briefly, shortly after my first hospitalisation. A friend of mine, a poet, who’d been working with websites since the internet was born, expanded his day-job digital design firm at this time by hiring a ragtag team of poets and artists, because he firmly believed that the skills that this kind of work demands – observation, analysis, succinctness, concern with form – are the same kinds of thinking that underlie a poem. Design, like psychology, is a field full of metaphor – I think this is because they both depend on processes that are not always as rational and logical as their proponents would like to believe – but the metaphor I encountered here that I’ve returned to, lately, is that of the gravity problem.

  A gravity problem is a predicament that either can’t be solved at all, no matter how hard or how often you try, or that can’t be solved because it has been misapprehended as a problem in the first place. The allegory is one of movement – if you’re trying to find a way to move more quickly or efficiently, one of the obstacles is gravity (as the terrible joke goes, it’s such a drag). But you can’t solve gravity as a problem. Mostly because it’s not a problem: at best, it’s just a thing that’s always there; at worst, it’s what you have to work around. It’s a neat metaphor, which I think is why I found it so appealing – the best metaphors are those that fit so tidily that they feel natural, inevitable – but when I was reminded of it earlier this year, the thought it suddenly sparked in me was this: perhaps my illness, this problem I’ve been trying and failing to solve for years, is precisely this: a gravity problem. Perhaps I’ll always be orbiting around its centre because that centre is one of gravity, an inevitable force that it does not do to fight or pull against. This is important, because there’s nothing tragic about gravity. Most of the time – except for when we stumble – it doesn’t hurt at all.