On illness and 'living the questions'

Once I would have dreamt about having all this time to myself at home — time, I no doubt would have assumed, to dream, to write, to create, to grow, to rest.

But time marked by mysterious illness is somehow different: the days feel stiflingly long and empty, yet somehow dizzyingly accelerated. Where did the week go? The month? The year?

People ask me how I pass the time, and I never know how to answer. What I want to say is that I either sleep a lot, or I worry a lot. What I end up saying is something along the lines of: 'I've watched four seasons of The Secret Life of Us on Netflix. Sometimes I spend hours thumbing through questionable content on TikTok.'

As the final months of 2021 gradually fold into one another and the shops begin to fill with mince pies and candy canes, I can't help but think about everything I should be doing. My desktop is a semi-organised chaos of half-finished stories and articles, partially edited documents, lists of quotes and fragmented notes, things I’ve started reading and long since forgotten.

Everything around me feels unfinished and uncertain, too: the stacks of unread books beside my bed; the vases of get-well-soon flowers on dressing and dining tables that I’ve stripped of rotten blooms, leaving only the hardy eucalyptus stalks to desiccate and drop; the jar of lollies on our bookshelf with some Minties and fruity chews left over from teaching in first semester; the frozen bananas in the freezer waiting to be blended into the healthy smoothie that never gets made; the unlaced walking shoes in the rack by the front door; heaps of unfolded washing on the spare bed and reusable masks pinned to the indoor drying rack; an abandoned craft project, piled on the bookshelf to prevent interference from the cats; the verandah covered in yet-to-be swept leaves scattered by a recent thunderstorm; a notebook flipped open to a small to-do list populated by simple, achievable tasks printed in red biro, the only working pen from the drawer: MAKE MUESLI, CLEAN ONE SHELF OF CUPBOARD, EMAIL CASE MANAGER.

Sometimes I'm lucky to cross one thing off.

***

The word ‘liminal’ comes from the Latin noun ‘limen’, for ‘threshold’. To exist in a liminal stage or state is to be on the boundary of transition — neither here nor there, before or after, but in the space between.

I don’t know who I am anymore, I sometimes think, this woman who has tumbled down the rabbit hole of her own body, someone at the indistinct boundary of illness and wellness, someone who cannot look forwards or backwards with any great certainty, who remains unsure how to reflect and understand or to dream and hope and plan when so many questions remain unanswered and reality seems more baffling and out of focus than ever.

'Who am I without my corporate clothes and fancy cappuccinos, my name on an office desk or door?' I often wonder. Who am I, stripped to a floral hospital gown, a nurse's hands in my lathered hair, my brain deconstructed as a series of shapes and patterns on an x-ray film? Who am I during these long, unseen hours spent fretting, sleeping, crying, pottering about the house, flicking through old cookbooks and family photographs?

She is a half-made-half-undone person, this Amber, neither the woman who smiles convincingly for Instagram photos on special occasions, who murmurs over coffee and looks remarkably fine, nor the next-day slump of a figure curled up in bed, barely hopeful enough to be able to shower or eat. She is somewhere in between — somewhere along a rickety continuum, a face in the mirror that’s fogged from the inside out.

***

Perhaps any type of certainty is actually just an illusion. There's that joke about death and taxes. For everything else, maybe we're always caught between worlds: the known and the unknown, the expected and the unexpected, the real and the unreal.

Mysterious illness has a way of white-anting the walls between them. On any given day, I feel optimistic, terrified, grateful, confused, ashamed, blessed, bewildered, resolute, bitter, bereft.

It's a lurching carousel I board and dismount day after day after day, now so familiar yet always so strange.

'How can this be?' I ask myself over and over.

On the worst days, I think I'm dying; on the best days, I think I'm merely losing my mind.

How can this be?

I beg my body to give up its secret.

***

In one of her essays on illness, Virginia Woolf talks about the sickened body as a pane of smudged glass through which the mind is forced to interact with the world. The experiences of the mind cannot be neatly severed from those of the body, as literature sometimes assumes. ‘All day, all night the body intervenes,’ she reminds us. And it is these interventions, ‘when the lights of health go down’, we must often navigate on our own: ‘Human beings do not go hand in hand the whole stretch of the way. There is a virgin forest in each; a snowfield where even the print of birds’ feet is unknown. Here we go alone.’

But loneliness — or aloneness, at least — is not something to be feared, reviled, or eliminated. ‘Always to have sympathy, always to be accompanied, always to be understood,’ Woolf contends, ‘would be intolerable.’ In illness, the fallacy of shared experience and belonging falls away. Yes, we may go alone. Illness may render us lonely. But with the peculiar aloneness of bodily affliction or failure comes a sort of clarity, a liberation from the bonds of presumptuous empathy: to be known, to be understood, by another sometimes only diminishes. (This is the Virginia Woolf who described 'the eyes of others' as 'our prisons' and 'their thoughts our cages', after all.)

Sometimes we have to allow ourselves the freedom of remaining misunderstood.

***

'All life is suffering,' a friend tells me over an iced chai latté. 'We're not meant to be comfortable all the time. Self-knowledge is a myth. You have to let go.'

In that gently fleeting moment, I believe her. I'm comforted by the delicate skin that crinkles around her pale blue eyes when she smiles, the ease and kindness with which she says 'Fuck that!' when I confess I'm sick with worry about missing work, all the things I'm not doing, the people I'm letting down,

But still I dwell on the certainty and knowing that eludes me. I search for syllables to describe the puzzling symptoms, bend and stretch the words in directions a doctor might understand. I try on diagnoses for size. Nothing fits. I go over the timeline in my mind. Nothing makes sense. I wonder whether I should quit gluten, walk around the block every day, drink more water, take less Panadol. I feel it is all my fault, and the shame as much as anything else threatens to overwhelm me.

Should should should. Shouldn't shouldn't shouldn't.

I try to meditate on Rilke, who once wrote to his friend: 'Be patient towards all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue... Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.'

I think of Rumi, too, who writes: 'Out beyond ideas of wrongdoing and rightdoing, there is a field. I'll meet you there. When the soul lies down in that grass, the world is too full to talk about.'

I don't yet know how to lead my soul to that grassy field.

So, instead, I paint my toenails badly. I eat Nutella out of the jar. I float in my cousin's pool on a foam noodle, labelling clouds as they slough across the sky: cirrus, stratus, cumulus. I bake biscuits. I water the Zanzibar gem, delight in all the new green shoots on the geranium dad struck for me, wonder why the peperomia on our balcony is yellowing in the warm spring air. I inhale the heavy damp of a late-afternoon storm, comfort the cat who's crouched beneath the couch, scared of the rumbling thunder and sudden pelt of rain. I send an email. I wear slippers to the shops and pull hair off my clothing as I wait in line for the self-serve checkouts. Sometimes I let myself cry for five minutes. I try to live — or live with — the questions.

These are the only things I know to do.

What do you read when you're sick?

I sometimes still joke that Gerald Durrell’s My Family and other Animals saved my life.

In 2013 — a year in which I bounced in and out of psychiatric care multiple times, including a stint of intensive electro-convulsive therapy — the task of reading, usually a pleasure, had become something of a chore.

When a family friend lent me a Coles green bag stuffed to the seams with self-help books, I vaguely remember sorting through the titles and reading some of the blurbs, only to slot them back into the bag unread, despite their optimistic promises of revelation and relief.

Instead, I passed the time by binge-watching Breaking Bad on my laptop and attempting to perfect fiddly recipes such as traditional Victoria sponge cake. Sometimes I’d bomb myself out on Seroquel and spend half the day on the couch, staring at the ceiling and listlessly stroking whichever cat or dog had decided to keep me company.

‘I was heartbroken once,’ my mother explained one day, ‘and my grandma lent me a copy of Soothing Syrup, which ended up being just the right medicine.’

Feverish in her pursuit to keep me afloat in any way she could, Mum went riffling through her bookcase to find me something fun to read.

On some of the bleakest nights, I’d crawl into her bed and read a few pages by the light of one of those clip-on lamps, fastened to the headboard.

In My Family and other Animals, the first book in an autobiographical trilogy, Durrell shares stories from the years he spent on the Greek island of Corfu with his siblings and widowed mother. A budding zoologist, he describes (in often hilarious detail) the escapades of his unusual family and the fascinating species he encounters in the island’s lush natural environment.

Although his older brother Lawrence (‘Larry’) Durrell went on to achieve greater success as a writer, Gerald is inimitably adorable in this well-loved classic: the pages of my mother’s yellowed copy seemed to thrum with the Corfu sun, and each ridiculous anecdote, rendered with so much wit and affection, pulled me out of myself for just long enough to experience some healthy distraction and release.

However, this experience left me with a pesky question I couldn’t stop pondering: What should we read when we’re sick? Why was it, I wondered, that a book specifically designed to help me felt so characteristically unreadable, while a book intended primarily to entertain was ultimately so therapeutic?

The years I spent researching this topic sent me in myriad unexpected directions, but I did eventually find some answers — or at least discover some patterns among the experiences of other readers grappling with acute or ongoing illness.

For one, it’s perfectly natural and even typical that reading becomes difficult during episodes of either physical or mental illness (though I make no distinction between the two). From simple decoding to assimilating information and narratives, reading is a demanding exercise that requires motivation, concentration, and energy.

This is partly why informational and instructional reading can be such a hard slog when you're not feeling your best. Knowledge can indeed be power when you’re struggling with infirmity and/or disability, so if you’re reading to learn or develop some coping strategies, you might benefit from limiting your reading to shorter bursts and more achievable goals: a couple of pages, for example, or one brief chapter. But you might also find that this kind of reading simply needs to wait. The readers I interviewed as part of my project often described how they had to postpone their reading until they were physically able to try again — and were in the right frame of mind to engage actively with texts and take their messages and advice with a grain of salt.

Perhaps more interesting to me was the reality that many of the readers I spoke to had eventually abandoned self-help reading — in part or altogether — to focus on fiction and memoir. Other people’s stories, they maintained, reinforced the validity of their own experiences and offered sometimes surprising forms of inspiration and guidance. Rather than seeing illness as a problem to be solved or eliminated, they were able to approach it instead with a sense of curiosity and acceptance.

When people ask me for book recommendations, I usually suggest reaching for something entertaining or compelling, a book in which you can lose yourself — or something so interesting and enjoyable that the act of reading itself doesn’t feel onerous or discouraging. It doesn’t matter whether it’s a poem or a crime thriller; if reading is gratifying, it’s often a welcome diversion from pain and lethargy.

Beyond that, however, texts that approach illness in a more nuanced way, refracted through lived experience, can soothe, inform, and inspire just as — if not more — readily than texts with an explicitly therapeutic function; in fact, there’s a branch of research and treatment devoted to exactly this phenomenon: bibliotherapy. If we read to know we're not alone, as C. S. Lewis once said, then texts of all kinds can forge the kinds of meaningful connections that bring hope, consolation, and escapism on even the darkest days.

Can I recommend some specific titles?

Well, yes, sort of, but with one big caveat: every reader is different, and what I find helpful may vary dramatically from what another reader might enjoy and endorse.

That being said, a book I would recommend without hesitation to any reader experiencing depression or anxiety is Matt Haig’s Reasons to Stay Alive, which is composed of easily digestible mini-chapters that explore his own experiences of mental illness, including episodes of suicidal ideation, as well as various reminders and approaches that have helped him along the way. (He has since gone on to publish two other books in a similar self-help-slash-memoir format: Notes on a Nervous Planet and The Comfort Book.) What I like most about Reasons to Stay Alive is the way in which Haig normalises prolonged experiences of mental illness: rather than claiming he’s made a full recovery, he observes that depression and anxiety are woven into the fabric of his life. They are constant companions, and he has good days and bad days, but life is nonetheless worth living, and he’s learnt to hold his pain a little more loosely over time.

***

Perhaps it’s no coincidence that I was midway through a women's memoir bender this year when I fell mysteriously ill. I was diagnosed with ankylosing spondylitis and Crohn's disease in my mid-20s, so being unwell is not unfamiliar to me. But the sudden onset of new symptoms — and a barrage of hospitalisations and tests — has presented me with some challenges (physiological, psychological, social, professional, financial) that I doubt I could have endured were it not for the stories that other women writers have so generously and bravely shared.

In The Lady’s Handbook for her Mysterious Illness, American author Sarah Ramey chronicles a significant period in her life in which diagnosis eluded her, despite debilitating signs and symptoms of something very wrong. Originally, I was drawn simply to the technicolour dream cover, but Sarah’s account of interacting with a healthcare system often hostile to the bodies of women and marginalised folk was so poignant (and fizzy with a simmering rage) that I couldn’t put it down.

'There is a secret society of sorts that no one — not even the members — has heard of,' Sarah writes. 'We don’t look alike, we don’t dress alike, and we’re from all over. There is no secret handshake, no meeting place, no cipher. We are the women with mysterious illnesses, and we are everywhere.'

I've read mixed reviews of the book, and as a middle-class-ish white woman, I'm probably not the best person to address some of the ways in which Sarah supposedly fails to acknowledge her relative privilege (she is also a middle-class white woman — highly educated and the daughter of doctors who can afford to pursue testing and medical intervention in the American healthcare system). Much of the book is geared towards unpacking certain aspects of the 'feminine' that generate medical bias and dismissal, though one chapter in particular explores these aspects more philosophically, concluding that the heroine's journey (as opposed to the more familiar and masculinised hero's journey) may hold the key to living more optimistically with chronic illness. I felt this chapter could have been edited down to something more succinct and less repetitive, but I didn't respond as negatively as some readers who felt the premise itself was exclusionary towards gender-diverse readers. (My sense was that Sarah was describing some of the ways in which typically 'feminine' traits and behaviours, no matter who's expressing them, tend to attract censure and ridicule, though I thought other readers' impressions were worth flagging; perhaps the book would have been stronger without this considerable diversion.)

Even if some of the content didn't sit well with me (i.e. offering restrictive dietary advice), I'm glad I persevered with this book and read to the last page, if only to revel in some kind of resolution. After many years and repeated instances of medical apathy and trauma, Sarah eventually makes sense of her cryptic symptom profile — but it's a long and arduous journey to get there. If you're a WOMI (Woman of Mysterious Illness), you might also find this book an engaging and courage-bolstering read.

In Hysteria: A Memoir of Illness, Strength and Women's Stories throughout History, South Australian writer Katerina Bryant likewise addresses women's experiences of diagnosis and medical treatment by blending memoir with historical analysis.

The book opens with Katerina wandering the supermarket in a daze of depersonalisation — an unsettling account that introduces the psychogenic non-epileptic seizures (PNES) Katerina suddenly begins to experience in her early 20s, what she describes as a 'modern incarnation of hysteria'.

A functional neurological condition, PNES occupies a puzzling position where psychiatry and neurology overlap, and Katerina's engagements with medical practitioners reflect this ambiguity. Interwoven with her own observations about chronic illness and clinical interventions are stories of various women pulled from historical archives, such as the ‘Queen of Hysterics’ Blanche Wittmann. The resulting work is a tapestry of rich narratives and startling questions about the mind–body connection and the limits of a medical model that continues to characterise women's illness as imagined, exaggerated, or inexplicable.

Kylie Maslen takes a similarly kaleidoscopic perspective in her recent memoir, Show Me Where It Hurts: Living with Invisible Illness. Structured as a series of interrelated essays, the book provides incisive commentary on, and insight into, the reality of suffering in ways that are not immediately obvious to the people around us. Having borne more than 20 years of chronic pain and illness, Kylie is attuned to the tedium of getting by in a world that typically fails to accommodate — or even notice — the plight of the chronically sick.

One chapter, for example, catalogues the complex problems that chronically ill women face as they age, especially when living and medical expenses, coupled with reduced capacity to work, undermine long-term security and quality of life. Another chapter details Kylie's history of alcoholism as a means of coping with unrelenting pain. 'I didn't see my drinking as important,' she explains. 'I saw it as necessary.'

But Show Me Where It Hurts also offers generous glimpses of hope and humour. The first chapter, titled 'I'm Trying to Tell You I'm Not Okay', describes some of the flaws associated with standardised pain assessments while also considering the potential of memes and other visual representations to fill gaps in communicating the severity of our symptoms; in 'Scar Tissue', Kylie talks about the way in which tattoos have helped her reclaim a sense of ownership over a body that's been scarred by a host of other procedures and intrusions.

Suffering from a chronic pain condition myself, I suspect that many other readers will easily identify with some of the frustrations Kylie shares: craving validation from doctors who are preoccupied only with lab results rather than what patients themselves know and describe, rationing medications when prescriptions are only begrudgingly given, finding solace in cosily repetitive activities such as re-watching your favourite TV shows. (Nigella Bites, I'm looking at you.)

But what I feel this book does best is demonstrate that experiences of pain and illness, no matter how pervasive, ultimately remain highly personal — that every individual who endures suffering does so in sometimes unpredictable ways, and on their own terms. Show Me Where It Hurts reminds us that true empathy is not about saying 'I know how you feel', but in acknowledging that we cannot always access or understand another's pain. We need to make space for these idiosyncratic experiences and develop new languages through which to communicate with one another.

'It is not my body that is at fault,' Kylie insists, 'but society’s failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out.'

I've taken a little break from memoir-reading at the moment (I just finished Emily Maguire's latest novel, Love Objects), but I'm keen to dip into some more non-fiction as I continue to navigate this fully sick year.

What do you read when you're sick?

Please let me know if you can recommend any specific titles.

*If you're interested in finding out more about Katerina's and Kylie's books, this review, penned by the wonderful Jessica White, offers a much more comprehensive summary of their themes and accomplishments.

Three books that changed me as a young(er) reader

CW: I mention suicide in this post.

My eldest nephew recently turned 11, and knowing he’s a ravenous reader, I asked my partner what he liked to read as an older kid or younger teen so I could explore some new options.

‘The Wheel of Time series,’ he offered, without much hesitation: easy-to-read high fantasy with plenty of dragons and battle scenes.

The first instalment is now sitting on my dining table, ready to be wrapped and delivered. (The thing is gigantic. Good luck, little man.)

Thinking about books for kids, however, has prompted me to reflect on some of the books that had a real impact on me as a younger reader.

Some of my favourite books from when I was around the same age as my nephew included The Secret Garden, The Lion, the Witch and the Wardrobe, and a little purple book of short stories all about mother–daughter relationships, which I think I might have ordered from the Scholastic book club catalogue.

Every Christmas holiday, when my family travelled back to Australia on furlough, I loved to visit the local library in my grandparents’ tiny town and borrow as many Nancy Drew novels as I could. My friends and I chomped through a steady diet of The Babysitters Club. (And why were we always reading about horses?)

I can see now how the types of books I read had a direct influence on my nascent writerly self. I remember — acutely, uncomfortably — writing a ‘mystery novel' for my Year 5 teacher as a gift; I used to make up stories for my siblings about a bunch of very small people called ‘the Shrinkies’.

But if I had to name some books that really shaped me as a slightly older reader — books that opened or blew my mind, books that influenced me as a writer — these are the three that spring to mind.

1. The Convenient Marriage by Georgette Heyer

Recommended to me by my Year 9 English teacher, The Convenient Marriage represented my foray into the regency romance genre, a phase I’m yet to outgrow. As questionable as this admission may sound, if you’ve ever read a Heyer novel, you’ll know how addictively atmospheric and witty they are.

I actually remember very little about the plot of The Convenient Marriage, aside from the protagonist Horatia Winwood’s expressive eyebrows. What I remember most is the language, the delightfully twisty plot lines, and the exquisite attention to detail that brought a distant and unfamiliar era to life with bustling intensity.

Heyer herself acknowledged the novels of Jane Austen as her inspiration, and like many of Austen’s heroines, Heyer’s are likewise headstrong and recalcitrant — outspoken debutantes who can be only superficially tamed within the misogynistic 'marriage market' that signifies both the setting and central tension in most of the novels. Ploughing through my mother’s yellow-paged collection instilled in me a sense that, as a woman, I could somehow write my way out of the status quo, and that frivolity is often a façade giving way to something much fiercer.

More than that, though, The Convenient Marriage persists as a treasured example of a teacher’s kindness and personal investment. As a desperately shy and unhappy teenager who felt largely invisible both at home and at school, a personal reading recommendation from a respected educator was affirmingly special. I still can't look at a Heyer novel without also thinking of my English teacher's embroidered jumpers and quiet command of an unruly classroom. Every teenager needs a teacher like that, someone who can say: 'I see you. I think you'd enjoy this story.'

2. The Underwharf by Gaby Naher

The Underwharf, first published in 1995, was literary agent Gaby Naher's debut novel, and I plucked it off the Toowoomba City Council library shelf primarily because I liked the cover!

Having read Melina Marchetta's Looking for Alibrandi a couple of years before, perhaps I was keen to sink my teeth into another Australian YA novel — this time something grittier and more literary. But there was just something hypnotic about the crop-top-clad young woman stretched behind the magazine-cut-out title that lit up my teenage brain: I was drawn to its dark glamour, the late-90s grunge aesthetic that I remember seeming alien and exotic against the metal library shelves.

Set in Sydney and London, The Underwharf straddles the unlikely realms of mother–daughter intimacy and the contemporary publishing scene, centring on Sophia, the daughter of an ambitious literary agent (surprise) who is haunted by the anonymity and absence of her biological father. Sophia prefers the company of her grandmother, Nella, and spends weekends scavenging the harbour shores with her best friend, Sammy.

As a character, Sophia could not have been further from the reality of my own life at the time: she reads tarot cards at the Camden Markets, seduces her mother's assistants, and peppers her speech with what I would have called 'colourful language'. But I connected with her hunger for identity and self-worth, something more tender and accommodating than the spiky maternal censure we did have in common.

It was only much later that I realised the extent to which Naher infused both her novels with painful autobiographical detail. I've read all of her books, including her memoir, The Truth about my Fathers, and I wonder why she didn't keep writing (she still operates a literary agency out of Sydney); The Underwharf was my first encounter with Australian literary fiction, strikingly similar (but superior, in my opinion) to Nikki Gemmell's earlier novels, which I also devoured in my early 20s. Reading The Underwharf in my senior high school years felt like a series of interlocking 'I didn't know you could do that!' moments: sentence fragments, non-standard punctuation, vivid sensory detail, and difficult, sometimes aggressively unlikeable, characters.

I wanted, in some ways, to be Sophia, but I wanted to write, in most ways, like Naher.

I still do.

3. The Interpreter by Suzanne Glass

When I got my first job after high school, I'd sometimes roam the local shopping centre after work: Donut King was conveniently close to the QBD bookstore, and I'd scan the tables for bargains, cinnamon doughnut in hand, still chuffed by the novelty of being able to buy whichever titles I liked.

The Interpreter was another novel I picked out by its cover. I'm pretty sure it set me back all of $5.00, but I've re-read this book so many times in the intervening years that the wash per wear must now sit at zero.

The story unfolds from the perspective of two characters caught in an unlikely impasse. Dominique, a simultaneous interpreter, overhears a conversation between medical researchers at a conference in which one discloses some information about a promising advance in HIV intervention. She is immediately hamstrung: she's bound by the oath of confidentiality, so she cannot pursue or share additional information, yet she feels compelled to find out more because a close friend is dying slowly and painfully from AIDS.

When Dominique unknowingly strikes up a relationship with the scientist in question, neither knows what the other must keep secret. Dr Nicholas Manzini has also stumbled into his own critical dilemma, tugged in dubious directions by his pharmaceutical employer. But although the narrative is premised upon the inevitable tension between ethical frameworks and uniquely personal circumstances, it's also a story about voice and agency, the limits of language, what happens when communication does not (or cannot) achieve what we want it to.

Suzanne Glass was herself a trained interpreter, and as an aspiring linguist, I was fascinated by these glimpses into the real world of interpreting and translation. But the book struck a personal chord, too. Only a year earlier, a friend of mine had killed himself, revealing in a hand-written letter that he'd been diagnosed with AIDS and couldn't afford to access experimental antiviral treatment as an American without health insurance. At the time, effective management of HIV/AIDS was still years away; I felt Dominique's heartbreak along every crack.

The Interpreter was also a lesson in the poignancy of truth — mindfully excavated — unpretentious writing that is elegant because it is precise. It was in the pages of this book that I first came across the French saying le coeur connait ses raisons que la raison ne connaît pas: the heart knows reasons that reason cannot understand.

And did you know that vertigo is not the fear of falling but the fear of wanting to fall?

I can't wait to read The Interpreter again once I've worked my way through some new books on the bedside table.

Which books would be on your list?