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.

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