In the opening essay of The World Was Whole, Fiona Wright connects our bodies and our living spaces, and the way we strive to feel at home – ‘comfortable and comforted’ – in each. This is a book about the complexities of home, about being unhomed, about the body as home, and about the spaces we work to make home, our dwellings and our neighbourhoods. When life is marred by unbelonging and grief, it is the habits and routines of being homed that bring comfort and even joy.
Wright’s first essay collection, Small Acts of Disappearance, is an intimate portrayal of her struggles with chronic illness and anorexia. Though it recounts her time in Berlin and Colombo, as well as in hospital and therapy, and draws on other authors’ related works, the collection is tightly focused on her experience of illness. Conversely, while the narrative of Wright’s illness drives much of The World Was Whole – one of her arguments is that illness is an experience of being unhomed from one’s own body – its scope is broader. In the collection Wright’s time in Shanghai, a city with a population as large as Australia’s, is juxtaposed with the items arranged on her bedroom shelf in Newtown, a stay in hospital with a tour of Iceland. Throughout she asks, what is it to feel at home, comfortable and comforted, and to be at home in the world and in one’s body?
The questions posed by The World Was Whole resonate for me. Yes, Wright and I are both women, both writers, born in the same year, living in adjacent suburbs, with shared preferences (walking, good coffee and soft-eared dogs among them). Wright’s prose illuminates the universality of her themes — but my recognition cuts deeper. I’m trying to write my way into her ideas from within my own chronic illness, its turmoil and limitations.
After six months of tests for every testable condition reveal only a person who, on paper, is perfectly healthy, the specialist labels my worsening illness post-infective fatigue syndrome. Even naming the variety of chronic fatigue is a process of elimination: I haven’t had cancer, so it can’t be post-cancer fatigue, nor a concussion, so it can’t be post-concussion fatigue. I ask what caused it. Could have been anything. A cold or flu, he replies. Even a subclinical infection, something you were unaware of. All medical science can definitively say: sometimes, this just happens.
Over the first year, I become increasingly unwell (later I learned this process is called insidious onset). Background noise turns to auditory chaos. My lungs randomly constrict, and I struggle to breathe. Bright lights stab my eyes. I wake with a sore throat most mornings. Music takes a physical toll. My left ankle and right elbow crunch with pain. My body forgets to inform me that my cardigan is too hot, and I develop heat rash. Underpinning it all is the oppressive fatigue.
Nearly everyone who sees me says, you look great.
The personal essay form allows a writer to focus on ideas and themes, rather than follow the narrative arc that might be expected of a conventional memoir. In several essays in The World Was Whole, Wright resists narrative altogether. She introduces this approach in ‘The Everyday Injuries’, when she speaks to a friend who is going through a breakup. He has the big things under control, he tells her; it’s the little things that he can’t handle, like filling in a form that asks for an emergency contact. This, Wright says, is the human condition:
the big things are too abstract, somehow, for us to ever really have to deal with, but the tiny ones, the everyday occurrences and injuries, are our undoing, as much as they are the things that bring us joy. The small transfers of energy that shock us, sudden and electric. The hidden things that they illuminate.
‘The Everyday Injuries’ is the first of five essays composed of curated anecdotes, encounters and small moments, Wright’s everyday occurrences and injuries, and, sometimes, the things that bring her joy. This establishes the book’s dynamic. In her more traditionally structured essays, Wright presents her ideas and themes, pairs her experiences with research. The fragmentary essays allow Wright to dilate on her themes, to capture her lived experience on the page the way it is and was lived: joys muddled up with grief, small comforts, panic attacks, and the delights and torments of the season, of friendships, of food.
In one of these anecdotes, Wright is watching raw film footage, with the dialogue spliced apart. She’s ‘amazed at how instinctively we make connections, build narrative even where there are no cues, this almost reflex grasping for story and sense.’ Wright does leave cues for her readers, threads for us to grasp at. There is the thread of Alex, the boyfriend with whom she has her first romantic weekend away, whose shoulder she cries on, who presents her with a bouquet of broccolini. The sparse brushstrokes Wright provides are enough to foreshadow that things won’t work out with Alex. They see a film together, ‘a romance, about two creative people trying to hold on to each other and their work at the same time and their work at the same time’. It brings Alex to tears. ‘Later, months later, this will feel portentous.’
What I most want, on the days I don’t have the energy to rise from bed, is for my husband to spend time with me. Steve works full time and is completing an executive MBA program. He now also takes on all our domestic work without complaint. This leaves him even less time to sit beside me, to hold my hand and say, I can’t believe this has happened to you.
We both believed, I think, that when he submitted his final MBA essays, the pressure would ease. Instead, he takes on a project at work that is the equivalent of a second full-time job. Steve, with his full and unimpeded health (if you discount the stress that sometimes turns the skin of his face grey), extends his work into evenings and weekends. I spend my days laying on the couch, unable to read. My short-term memory has become so affected, I often can’t remember the beginning of a sentence long enough to make sense of the end. I watch Netflix until I lose my way in the narrative. Then I stare at the wall.
In the traditional narrative arc of the hero’s journey, the protagonist faces an ‘all is lost’ moment, typically between half and three-quarters of the way through the story. For Wright, it comes just past the collection’s half-way point, when, in her psychologist’s office, she discovers her weight has dropped:
I lose it, I lose it entirely, start shaking and choking on my sentences. I’m sick of fighting – and I say this – sick of trying treatment after treatment with them all to no avail, and all I want is to rest awhile. The psychologist isn’t fazed by this, she says, of course you can, and I feel suddenly like Dorothy, who always had the power to go home.
But Dorothy’s narrative had a neat and tidy ending, and an uncomplicated understanding of home. For Wright, things are not so simple.
The problem for her writing, as Wright has noted when discussing the book, is one of beginnings and endings. She doesn’t have a beginning, as she says, not knowing exactly when or how her illness began. And she doesn’t have an ending, because she is still not well, not recovered, and nothing is resolved. Yet she does have memories of her teenage self, her youthful ‘full and unimpeded health’. In ‘Slipstone, Clingstone’, she recalls this girl as ‘ardent and furious’. And in The World Was Whole, she offers us an ending. It’s not the ending she wants, not the ending we want for her. But it is hopeful.
She learns about ‘a new and slightly different diagnosis, severe and enduring anorexia nervosa’. Though sceptical, she appreciates its acknowledgment ‘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’. By this time, after fifteen years of illness, including eight years of treatment, Wright is not hopeful about her recovery, in part because the research is not hopeful: she was an adult when she first became ill, was sick for nearly a decade before seeking treatment, and has her physical illness to contend with, and these are all factors that indicate a less likely chance of recovery. Discovering this new diagnosis shifts Wright’s perspective. Perhaps it’s not a battle to be fought. Perhaps it’s ‘a gravity problem’.
‘A Gravity Problem’ is one of the key elaborations of Wright’s thesis in The World Was Whole; a gravity problem is either a problem that has no solution or is a situation that has been misunderstood as a problem. ‘You can’t solve gravity as a problem. Mostly because it’s not a problem.’ For Wright, this means living in a different paradigm, one in which she acknowledges her chronic illness as a disability, and a likely permanent one. There is grief in this: accepting her illness as a gravity problem means giving up on the healthy self she has long imagined, giving up on ‘ease at cheese night’ and ‘the idea of myself as someone who loves travel and who might do so with the impunity and unequivocal excitement of my healthy friends’ and much more. The journey of The World Was Whole, its narrative arc, brings Wright here: ‘I always thought that I would one day…be unimpeded in the world; and what I’m coming to accept now is that I can no more do this than go against gravity and fly.’
Wright does, however, find comfort in spite of being unhomed by illness. Her years of sharehousing bring her a new type of family. She’s learned, from one of her housemates, the value of cosiness, that it is worth the investment (of time and effort as much as money), even within the precarity of renting. She’s struggled through the disruption, expense and uncertainty of moving house four times, of starting afresh, discovering the work it takes to ‘orient [her]self inside’ a new space, to feel ‘situated, centred, placed’ within it. And she lives in a place that she loves, in the suburb of Newtown, even if she doesn’t fit in as seamlessly as she’d once imagined she would.
Wright had ‘been waiting to get a dog until my life felt less precarious, until it felt more settled. Until I felt like an adult; until I started making permanent, rather than provisional decisions about my life.’ In the final essay of The World Was Whole, she gets a dog. Her dog meets a need she never knew she had – to be needed and not wholly self-sufficient in the world. Her dog brings her joy and comfort, as well as a new perspective on life. Quoting Denise Levertov, she notes, ‘a sniffing imagination, an intended haphazardness – these are the things I want for myself and my life, and they are the things that come so easily to my silly, lovely dog.’
The closing image of the collection is of Wright’s dog snuggling into her side, of Wright accepting the gladness and gratitude this brings her. This ending isn’t neat and tidy. Her dog cannot solve all that ails her – as she writes, ‘these things are not that simple’. But this image, of being comforted, if not fully comfortable, is hopeful.
Two mornings a week I drag myself to my own job. Steve wants me to quit. I try to explain that this is one of the few scraps of my healthy self that I’m still clinging to. My healthy self: that person who hiked and ran and swam, who performed stand-up comedy and threw parties and danced, that person who doesn’t currently exist and may never exist again. My work anchors me to my pre-illness life and gives shape to otherwise endless weeks. If I quit, I say, I’ll spend every day home, alone, waiting for the small mercy of you to walk through the door. It leaves you exhausted, he counters.
He doesn’t mention my shrunken salary. He never once mentions this.
When Wright was in her early twenties, a friend of a similar age took a job in an office. There, his supervisor had a daily lunch routine: same food, same time, every day. Wright and her friend laughed privately at the older man, thinking of him as boring and rigid, as someone who had given up on life. She finds this memory illuminating: ‘I have kept returning to this story, I think, because it’s taken me so long to recognise the value of my own quiet rituals, and the joy and even succour that they bring.’
The comfort of routine is a recurring theme in the collection, one Wright explores directly first in ‘Relaxed, Even Resigned’, an essay about her inpatient hospital program, and then in ‘A Regular Choreography’, an account of a trip to Iceland. Returning home from her hospital stay, she makes note of how she feels:
I’d missed my home, the habits I have that shape it and are shaped by it, the small delights that it gives me across the day. I felt collected, grounded. And I thought, I must remember this, in the coming months, as my habits and routines become once more invisible because of their ordinariness, their everyday repetition. I must remember how they help me, hold me.
(It’s a bitter irony that the next essay in the collection begins at the moment when she and her housemates are evicted from this home.) Writing about travel, she expands on her ideas about home, drawing on Iris Marion Young’s thinking on two types of time; transcendent time ‘that rare, luminous time of important or startling events – like travel…moments where we are transported out of our regular selves and assumptions’ and immanent time, which is ‘regular, unruffled [and] passes mostly without us noticing’. Ritual and routine are part of immanent time, time that is often considered wasted, unimportant, even though it can make up as much as sixty per cent of our day. There’s a clear hierarchy: our cultural narratives tell us travel is valuable in part because it’s an escape from immanent time.
In this way ‘A Regular Choreography’ is both a typical travel narrative, portraying the geographic wonders of Iceland, and its inverse, an argument for the value of home’s ritual and routine. The World Was Whole maps Wright’s immanent time; she scrutinises her private, unperformed self for this purpose. The book has its transcendent moments, in Iceland, in Shanghai, in hospital. But immanent time ‘is how we connect with, and cope with, the much more ordinary existence that really is the stuff of so much of our lives’. In this way Wright urges us to reframe our perceptions, to find worth in ‘the domestic, the homely, the repetitious and the known’. These are, after all, ‘the spaces where we may truly be ourselves – our private, unscrutinised and unperformed selves. Our small but significant selves.’
I have my elbows on my knees, my head in my hands. Later I’ll learn this particular tiredness, when it’s too difficult to hold myself upright, is called orthostatic fatigue. Learning that this experience has a medical term is consoling. It’s not just me, I think. I’m not making it up.
Other terms I learn: air hunger, temperature dysregulation, alcohol intolerance.
The World Was Whole is also a book about joy. Wright addresses this explicitly. ‘I think it’s harder, sometimes, to write about the things that make us happy, that joy is so large and expansive an emotion that it’s often more difficult to confront or attempt to contain.’ This seems true. Grief writing is practically a genre of its own. Australia has the annual Grieve Writing Competition, with its accompanying anthology. There’s no equivalent dedicated to joy, and certainly not immanent joys. But confronting joy is a valuable counterbalance, as Wright emphasises in dismantling a common aphorism: ‘I don’t have my health, but I also don’t have nothing, and the things I do have I have fought hard for, and cherish all the more for that hard fact.’
The joys she depicts function as some of those ‘small transfers of energy that shock us’ in the midst of struggle and grief. They are ordinary things, an afternoon at a pub courtyard filled with dogs, the first open-toed shoes of spring, the bodily motion of walking, and trips to the park with her dog. ‘The joy this brings her – the pure animal abandon and ear-flapping elation – is one of the simplest yet most expansive pleasures of my everyday.’
Nearly half of all Australians live with a chronic disease, so it’s absurd, this concept we have ‘of full and unimpeded health, a body or a brain that operates without impairment or obstruction’, that we see people like this as a baseline standard, instead of almost superhuman in the capacity their good health grants them. It is her ability to expose such fallacies that elevates Wright’s essays. ‘Fighting as hard as I did for as long as I did was driven in no small part by ideas…that devalue any life that isn’t unencumbered.’ Through a scattering of small pleasures and deeper joys, Wright urges us to contemplate the encumbered lives, to develop a wiser rhetoric around these realities.
On the phone at work, a woman repeats her mobile number. The numbers feel alien, like I have to drag their shapes from a murky swamp. I clamp a hand over my left ear, trying to shut out the office chatter.
In the months before I became fully sick, I was offered a PhD scholarship. It still shocks me, the extent to which intelligence is a function of wellness, especially when I’m struggling to remember how to write the number 8.
In The World Was Whole, Wright does a lot of drinking: wine, beer, sweet champagne, strong gin cocktails, Aperol spritzes. There are only two essays in which drinking isn’t mentioned. Wright has written about drinking and addiction elsewhere, saying, ‘I’m not an alcoholic, although my relationship to alcohol, I know, is not uncomplicated.’ Still, the more mentions of drinking I note, the more I catch myself thinking, all that alcohol can’t be helping.
I’d like to believe I can shut down the part of my brain that judges the behaviour of others. It feels traitorous. Since I’ve been ill, my behaviour has been frequently judged. I’m often asked if I’ve ‘tried pushing through’ my fatigue. Another favourite: ‘Do you think it might all just be in your head?’
It’s easy to get annoyed by this, to see it as insensitive and judgmental. But I suspect there are deeper motivations to comments like this, and to my instinctive reaction to the allusions to drinking throughout The World Was Whole. It’s rooted, I think, in a genuine desire for the ill person to get better, for there to be something that the individual can do to shed their encumbrances. Wright may be working through the idea that she may never recover but I still want to see her recover (and so does she, of course; when she discusses stepping back from treatment, one of her therapists ‘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’). When I think, all that alcohol can’t be helping, I’m really thinking, but have you tried everything, and, maybe this is the thing that would make the difference – even though this is ridiculous – because it allows a speck of hope.
And I need hope, because there is also this, rooted in this thinking, this thing I have learned from all my attempts to explain my mysterious, invisible illness to people who’ve never known someone struggling with it: in describing my experiences, I’ve given them a glimpse of a lurking monster, one that could savage their own lives, or the life of someone they love. Asking me if I’ve ‘tried pushing through’ is an attempt to lessen its fearsomeness. Maybe the monster isn’t all that terrible; maybe I just haven’t tried hard enough to free myself from its grasp. Wright’s openness to the prospect of never recovering is unbearable to me. My thinking is still trapped in the illness/recovery paradigm, in the understanding of illness as a wrong to be righted, the paradigm Wright breaks down in ‘A Gravity Problem’.
There’s also jealousy. Alcohol was one of the first things illness took from me. Early on, so early that I didn’t connect the change with any other symptoms but instead ascribed it to ‘getting older’ (I was 33), a single drink became like a glass of sand, leaving me parched for hours, no matter how many glasses of water I gulped. One drink also began to keep me awake for hours through the night. Despite this, I still occasionally give in and order a glass of sparkling wine, ‘to celebrate’, hoping that maybe this time, it will be like it was before. I can’t reconcile the way alcohol makes me feel now with my memory of it, just as I can’t reconcile the person I am now with the healthy person I was. It’s no wonder to me that it took eight years of furious effort for Wright to finally consider stepping back from treatment.
For months, Steve works the equivalent of two full-time jobs. He tells no-one at work that I’m ill. When he is home, he does the cooking and cleaning, pays bills, and, if I ask in the right tone, helps me to stand up and even, when I’m especially fatigued, to walk across the apartment.
What he will not do is listen to me ‘complain’. I still can’t believe this inexplicable thing has happened to me. I can’t bear being trapped in this apartment that I’m beginning to hate, too exhausted to function. He hears this every week, and he’s tired of it. Steve comes from a stiff-upper-lipped family, a roll-up-your-sleeves-and-get-on-with-it family, a family that doesn’t end every phone call with a round of I love yous.
All our family, his and mine, live in Canada, and one result of moving so frequently throughout my life (eight cities, five countries) is that none of my friendships are quite close enough that I’m prepared to test them with an outpouring of negative emotion. Steve wants me to talk to him the way I talk to my friends, to acknowledge my challenges but hold myself stoic. You have to just deal with it, he tells me over and over, you just have to make the best of it. Steve isn’t my friend; I don’t have the emotional reserve to make the situation okay for him. What I want is for him to grieve with me, to not feel so alone in my grief.
It’s through my work that I come to know Wright. I’ve managed to cling to my job (through my own stubbornness, but also through the patience of my employers), and so, because I work in the writing community, I end up working with her. And then, because the writing community is small, I end up chairing a panel at a festival, in which she speaks about this collection. My body floods itself with adrenaline, its tactic for dealing with big events, and I feel upbeat. There is only one moment on stage, when Wright – Fiona – says that it took her years to realise she was writing about grief, and I struggle not to cry.
Though Wright and I are the same age, she seems older to me (on paper at least), perhaps because she’s weathered much more, through her ‘severe and enduring’ illness, and developed wisdom around this, while I feel as though I’m flailing, still immature in my illness.
At work, Steve angles his project into a promotion and a pay rise. The team he leads win a global award. Some people are more comfortable at work, our counsellor explains to me, because there’s more structure there, clear objectives. It can become a safety blanket, when other parts of life get too hard. This shouldn’t excuse an inability to express grief or the attempt to police my feelings. But it helps me forgive Steve for not being there in the way I need him to be.
On a difficult day, Wright describes herself breaking down: ‘I was in tears. It was exhaustion, it was the unfairness of my illness, it was irrational and I knew it.’ My own coping is messy, often tear-stricken and sometimes irrational. While I know (rationally) that this doesn’t make me lesser or inferior, the reminder – that this is what coping looks like – is reassuring.
In ‘The Everyday Injuries’, Wright meets up with a friend from one of her hospital programs. Though he had been doing well, he’s now struggling. The same day, she runs into someone else from the program, someone who’d also been doing very well but is again having more difficulty. ‘I hold these two encounters close across the day because I’d somehow thought, even though I do know better…that I alone was continuing to be defeated, to somehow fail.’
This is what The World Was Whole gave me: insight into an internal world as volatile as my own, and assurance that the complexity of my feelings and the psychological landscape I’m traversing are not things I can ‘just’ deal with or ‘just’ make the best of. My distress isn’t anomalous. In portraying the everydayness of her own struggles, Wright assures me, even though I do know better, that I’m not alone in my grief, in my continuing defeat, and expressing that can be not only reasonable, but powerful.