Sickness and the Art of Healing

When we are well, we take our bodies for granted. We assume that, like faithful horses, they will carry us wherever we want, not just need, to go. We think, if we keep them well watered, fed, rested and exercised, they will carry us forever, easily, as if gravity has not been discovered yet. When sickness comes, it comes fierce and fast, like an axe blow, like a madman creeping up behind and slamming his fist into an unsuspecting skull, like a hurricane uprooting trees, ransacking roofs. One day we are well, the next we are sick, and in between is a gulf; dark, enormous, impassable.

Entering the ward for the first time filled me with terror. The shock of finding myself there, of forcing my feet to take step after step, making my mouth open and talk to the nurses, holding my arm out towards the needles and the machines, was akin to entering battle for the first time, or so I imagine. I knew I had to do it, but my body shrank and shrivelled at the notion, my brain blanched, rattling inside its bone casing, knocking to get out. It was very hard not to cry. Not to weep. This was not self-pity. More like horror at the turns the world takes without asking. It is times like these when we realise how helpless we really are, how we have no control over our destiny, how insignificant we are in the face of a blind universe. There’s irony here, too, in that the fact of our significance to ourselves and others is made manifest through the diagnosis. How we cling to life! How much we want to live! And that is what makes us take those terrible steps into the white wards, makes us strap ourselves up to machines and drugs and needles, makes us proffer our arms like junkies, despite our veins’ truculence, their revolt against their treatment.

When I left the ward after that first session, I felt like I had joined a club, and in so doing had left permanently the world in which for forty-three years I had felt so at home. I had joined the chemo club. How could anything be the same ever again?

*

When you are sick, when you suffer, you become a different person. Something like a moth slipping out of its chrysalis, only without the moth’s capacity for reinvention through the intoxication of flight. There is a shrugging off. A slipping away. Like a boat loosening its mooring ropes and leaving harbour. It is a journey, a setting out, only without the provisioning and planning that would usually prefigure such a voyage. You are literally all at sea. And helpless. It’s a lot like falling down a well. Sudden, irrevocable, terrifying. And very dark. There might be people to help you, only they are a very long way away. Back on the surface to be precise, while you are struggling, floundering deep in a shaft in the earth. Wet as well. Perhaps the most difficult thing of all is the ability to communicate. Shout all you like, but people hear different things: an echo, a sound like a stone dropping, the swoop of black wings, a scream. They are probably not even certain you are down there. Is it all a rumour? When they know for sure that it’s you, and that you are stuck thirty feet down, they’ll shout and lower ropes, when all you want is for one of them to climb down and join you. To know exactly what it’s like in the deepness and dark. To share it with you; take on part of the burden. Instead there’s this rope dangling in front of you in the pitch black, there’s the confused noise of their attempts to talk, there’s the dizzy patch of light so far away, and your slippery feet and hands trying to haul you there. If the people on the surface are thoughtful, they might lower you a light, find an interpreter, send a basket full of food. Maybe there’ll even be a torch and a message you can read and understand. Or maybe it will just be a candle sputtering in the dark, hope as frail as its flame.

*

There are days when I want to talk and talk. Splurge on the details. Let everyone share in my misery. There are others when I’m a clamshell, fiercely protective of what is inside. Those days it’s an ordeal to meet someone who hasn’t seen me since I fell sick, when to witness their response is a penance I don’t deserve. The slow registering, the dawning, the shock that dances in a face or a body, the commiserations, the questions. Days when to go over it yet again, to trawl the same old seabed is too much to bear. That’s when I look someone in the eye, my headscarf askew, and respond to their question of have I been well, with a firm yes. We make polite small talk and then I move on, head high, bald bits showing, shoulders shouting I don’t care. These are the days when the wound is still raw, when the slightest pressure makes it wince, retract, protecting itself like an anemone.

Some days, people’s sympathy is overwhelming. To brush up against them is painful; I’m fragile as a dandelion clock, blown any-which-way by the slightest breath of wind. One word will make me weep. I can feel the tears starting and I will them to stop. But the minute one slides out it’s too late, a torrent trembles behind my lids. One word will do it. Or the expression in someone’s eyes. These are the days when I feel exhausted. Battered by a storm that, by rights, ought to have stopped, my mind a rag, my body sagging at the seams. Exhaustion plays a big part in sickness and suffering. It is what makes the separation from that previous world so acute. There’s no crossing back when you are so worn out you cry all the time. There’s no picking up your sword and slashing your way through impenetrable forest, or saving yourself from quicksand. Exhaustion renders any activity impossible, let alone the heroic. Exhaustion is the big black cloud breaking on the horizon, the whirling dust storm burying cities, the scorching desert with an empty water bottle. How can you be a hero when your horse has bolted, and you don’t know which direction leads home? When you are helpless as a hamster and hairless as honey? How can you possibly negotiate the gulf/the well, when energy is something you have difficulty remembering and the word purpose seems like a cruel joke.

*

When I look back from the new land to which I have crossed but cannot fathom how to return from, it seems impossible to pinpoint when the crossing began. This is the axe-fall, the shutter subduing the light, the falling into deep water—sudden, sudden, sudden. And yet, I know there were presentiments, portents, if only I had paid more notice. Things happened—dreadful things—to other people, people I know. Once, dreadful things were the province of the world out there, far away, light years removed from my life. Somehow, the hoof beats clattered closer, like crows, circling and aware. A friend’s son dies. A friend’s daughter dies. A friend’s husband is killed in a car crash, her sons the same ages as my own boys. A friend’s son is gravely ill. What was the trigger? What made the previously bright universe turn malevolent? The horrors of the rest of the world, previously out there and far away, creeping closer?

Perhaps the strangest thing of all is how well I felt. No sense of my body’s imminent betrayal. When I found the lump and showed it to my doctor, we both knew it was benign. She took my pulse and blood pressure, commented on how fit I was, said it was a runner’s pulse. I laughed, saying the only running I did was after children. Even the doctor who did the biopsy was convinced it was benign. I spent Christmas waiting for results, with no sense of impending horror or fear. Then one more presentiment: my sister-in-law, holidaying with us in a hut on the side of a mountain, mentioned the women in her workplace in Perth, and the high incidence of breast cancer. I expressed concern but said nothing about my own predicament. When we look closely, there are signs everywhere. But so often we don’t know how to see. My boy is hunting for paper bags in the cupboard in which to put his lunch for our picnic. When I go to look, there they are at eye level, directly in front of him.

My grandmother believed in signs, and in black magic, too. She claimed her sister, who went mad, was hexed. Is this where I should be looking? At what I’ve done in my earlier life to warrant this new development? Not mad, but cells gone haywire. My grandfather survived Changi, spending many years of his time there in hospital with severe dysentery. Is this my Changi? He must have asked why every day and night; so must my grandmother, left behind to fend for herself and her five children. When their marriage unravelled after the war, she spent the rest of her life asking why.

In truth, there are no answers, and asking why can send us mad. Every act is a random one, and we, the only creatures on earth who seek both rhyme and reason.

*

When disaster strikes in someone’s life we have no idea how to respond. We are not used to weeping and wailing, gnashing of teeth. We look to words to help us. When something awful happens, though, it is words that are the hardest to summon. In conversations, in attempts to get thoughts down on paper, words stubbornly refuse to roll over and be suborned. It’s as if they have smelt something, something not quite right, and rush to someone else’s defence. Word spread slowly when my diagnosis occurred. Then rapidly. Many people sent cards, and their messages of hope were little lanterns in my life. I didn’t look too closely at the kinds of words people used. I didn’t think about the act of writing itself. Many people rang to talk and offer help. Meals were cooked, soups and stews and cakes and casseroles appeared, feeding the family, filling the freezer. Food, it seems, is a universal language, and it speaks directly of sustenance and succour.

It astonished me to see how friends rallied; who hopped on white horses to gallop to my assistance. There were others who stood by, helpless, stilled by a sense of horror at this random act. A mother of three children, quite young herself, so much to live for … I could hear my own cry echoed in their silence: why?

When thing go horribly awry in our lives it is our bodies that know what to do. They want to respond with comfort—cuddles, pats, kisses, hugs, holding. But our mouths and tongues are struck dumb. All the good words, the right words are gone. What do you say to someone whose partner is killed in a car crash, or whose child has died, or when someone is seriously ill? It is then we realise how little words can do. We look for the right words and we can’t find them. We think all sorts of things, but many of them are unpronounceable, unspeakable, uncompressible. Macbeth thinks desperate things in his soliloquies, wonderful and dreadful things. But they are unutterable in conversation. He speaks them aloud, to the air, the dark, the impenetrable universe, to God perhaps, and to himself. Their power lies in the self-realisation. Macbeth cannot say these things to his wife. He can only say them to himself once she has died. Once he has helped her to her death. As an audience, we are privy to their terrible beauty, but they provide no solace, no help, no comfort.

Words have been my passion since I was a child, but when I try to write to a friend about her bereavement they run helter-skelter in different directions, racing to get away. They refuse to help. They refuse to be pinned down in any way, to help me help others, or myself. What I need to do is reach out and hug. To touch. To make things better through some primal urge of the body.

One of the words people use for me is ‘brave’. I’ve never thought of myself as a particularly brave person. As a child I suffered from nightmares, was petrified of spiders and terrified of the dark. At eight, I would pelt from the lounge room down the long, cold hall to my bedroom, turning on the light with a pounding heart. In this same room, I would wake in the night, crying out for my ever-patient mother, after dreaming of the floor filling up with fat, hairy spiders, layer upon layer upon layer of them. In my early thirties I spent three nights in Pioneer Hut at the top of the Fox Glacier in the Southern Alps of New Zealand, praying that my husband and I would survive the storm that raged around us, threatening to smash the frail hut to pieces. I prayed, as I had been taught as a child, even though I no longer believed in that childhood God. That was fear. There was no exhilaration, no capacity to wonder at the magnificence and power of the world. Just blind fear.

When I had chemotherapy for the first time, when my head was about to burst open with its own drum beat, and my body felt like it had been poisoned utterly, when it felt like it had been taken from me in some foul act of treachery, when I couldn’t lie down, couldn’t close my eyes for the nausea—great, rolling waves of it, like a ship in a force 10 gale—that was fear. When I couldn’t sleep, when my body kept shrinking to a skull no matter what I ate or drank, that was fear. I am not a brave person.

To be brave. What does it mean? Brave is my uncle, a forward scout in Vietnam at the age of twenty, leading a troop through mud and jungle and field, not knowing what was out there, waiting. Brave is my paternal grandfather standing up to the Japanese guards in Changi, protecting a friend. Brave is my maternal grandmother raising four children, sixteen, fourteen, eight and six, alone, with hardly any money, after her husband died of a treatable disease. Bravery is my father, becoming the head of the household at fourteen, speaking no English in alien Tasmania. I am not brave.

I suppose what they really mean is that I seem to be bearing up. Putting on a brave face as opposed to being brave. There are plenty of private moments when the face slips and the tears fall: life seems too hard and little things assume huge proportions; when one more request or demand from a small child snaps the fragile threads of composure I’ve spun, and I collapse, tea towel in hand, unable to carry on. But these are only moments. Impossible for them to last. There’s too much to do for one thing: dishes to clean, meals to cook, clothes to wash, mouths to wipe, baths to run, games to play, rooms to tidy, phone calls to make, lives to organise … I can only rant at the world for a short time.

*

A lifetime ago, it seems now, I went back to university to do Honours in English. One of the course units was the works of Thomas Hardy. Until then, I’d only ever read Tess of the D’Urbervilles, having seen Polanski’s film at a very impressionable fifteen. We studied his entire oeuvre, from the lesser known novellas to the much loved great novels, and his poetry as well. How I came to love Hardy’s writing, but while I loved his storytelling and his wonderful facility with the English language, I struggled with his vision. I railed at the ending of Tess, completely unconvinced by Angel’s union with Tess’s sister, angry at his pompous words at her fate. I hated the President of the Immortals for his wanton sport. I cried at Jude’s fate, and at Sue’s and their children’s. How I disagreed with Hardy’s belief system: my world wasn’t like this! Blind chance, malevolent universe, fate—none of these matched my experience of the world. Now, older, wiser, I’m not so sure. Now I can understand Old Man Time’s note, ‘died because we are too many’.

I can understand, too, Sylvia Plath’s alter ego Esther Greenaway’s seeking out the dark places where she is unreachable, where the busy, racing world with its noisy demands is muted, silenced. And her jaunty, angry tone. When I push my youngest son off to sleep in his pram—a habit developed during the chemotherapy when he stayed with my mother during the day—and he tosses and frets and opens his eyes to peer at me instead of shutting them to sleep, I sometimes think a treacherous Old Man Time thought, ‘too many children’. And yet, what drives me crazy in all of this, what sends me frantic with grief and rage, is the thought of not being here for them, helping them to grow up. To grow from gorgeous boys into good men, to steal the title of a recent self-help book. What awful irony, to need both less and more of them. When I visit my friend and watch her now-fatherless boys leaping around with my boys, playing fighting games with guns and swords, then veering off across the paddocks to test their young masculinity on the ram who likes to barge intruders, and who is heavy as a tree trunk, I am filled with a fierce determination to survive. One of them speaks about their father as he eats his soup, waving his spoon to indicate that he’s up there somewhere, in the sky, watching over them. The flood gates threaten to burst open. I want to take my friend in my arms, never let her go again. Where are the words for this? Bravery is not one of them.

*

Radiotherapy today for the sixth time. Putting on my gown, glancing at myself in the mirror as I leave the cubicle, not quite sure what it is I’m seeing. No longer the shaven head and sunken cheeks of a concentration camp survivor, but it warrants a second look with the cotton gown. No, the hair is no longer stubble, but something longer, close to an animal pelt, soft fur. My face has lost its haunted look, the desperation that swung in my eyes has disappeared. Some days I even look jaunty, chirpy, as though my life force, as one friend described it, has come back. But it is all in the eye of the beholder. At an afternoon tea recently, one friend tells me I look radiant; another later confides to my mother that she thought I didn’t look so good. Who to believe? And how my spirits swing on their pendulum, from jubilant to downcast, from a sense of love to a sense of betrayal. Where is my body in all of this? Mostly it’s ready to run with me, but some days it drags itself after me, muttering and mutinous. Today, after the sixth radiotherapy, I feel sharp, stabbing pains in my breast, and matching ones in my back. Immediately my spirits are shattered. All I can think is that the machine has got its measurements wrong. It’s been beaming its noxious rays into the wrong parts of my body. Or else the disease hasn’t responded to those months of chemo at all, and is currently lapping its horrible mouth at my back, kicking up its heels when it should be retreating at a very fast trot. It’s difficult to stay chirpy at such times. Much easier to let the exhaustion that ebbs and rises, ebbs and rises, to flood and overrun.

Helping my son out of the deep gutter into which he has fallen while riding his bike, revelling in the ooze and drip of mud attaching itself to his bike’s tyres, I meet a neighbour. She stops to talk. Asks how the radiotherapy is going, and we compare notes, mine recent, hers ten years old. She tells me how she hated being given a numbered shelf into which to place her gown at the end of each session, that it rendered her an inmate; institutionalised her in some way. And of her fear of the radiation technicians’ fallibility: one error on their part, and the machine would be killing cells in a perfectly healthy part of her body. This is my experience too. Lying on the bed with the great eye of the machine watching over me, my mind is a skittish horse, racing away with loose imaginings: what if? what if? As the machine shutters its eye, its metal rods shifting into shapes measured to fit my breast, my body, I can’t help wondering what if they’ve got it wrong, or if the machine has a mind of its own? More incomprehensible still, who made this machine? Who dreamed up its astonishing and deadly capabilities? I can’t help but think of Marie Curie. I suppose I, and hundreds and thousands of women like me, owe her a debt. But all I feel is a strange mixture of pity and anger. There are so many of us.

Sitting in one of the chairs in the chemotherapy ward, my bald head showing the faintest prickling of new hair, lines from Sylvia Plath’s ‘Mushrooms’ leapt into my head: ‘so many of us, so many of us’. Everywhere I looked were people like me, having their cancer treated with chemotherapy, subjecting their bodies to poison to make it well again. Underneath our wigs and scarves and hats we looked like mushrooms too. Downy heads pushing against the light. Have you ever seen mushrooms growing in a box, round and milky, emerging slowly at first, then faster and faster? A bit like the birth of a baby, the crowning head, and then the body following in a steady surge. But mushrooms don’t just grow in boxes full of loamy soil. They heave their way through the tough stuff: hard, impacted dirt; cracks in concrete; black, sticky bitumen. Mushrooms belie their appearance; don’t be fooled by that soft head and fragile stalk lying on a supermarket shelf. When it’s needed, mushrooms know how to fight. And that’s what I want to shout to all the people in the ward: look like a mushroom, be like a mushroom! Mushrooms and heroism aren’t normally mentioned in the same mouthful, but it seems to me that they are not such an odd combination. Mushrooms have a survival instinct, a spine that sees them rise up to split the crust and embrace the air. Which is exactly what heroes do, metaphorically speaking. Heroes are survivors. They sweat it out against dragons and monsters, saving the distressed damsel and winning the king’s admiration, if not his crown. When I was a child, I devoured Greek myths and legends, Arthurian legend, fairytales and Shakespearian tales. They fuelled my imagination, along with the indomitable Pippi Longstocking, hero to-the-end. A couple of years ago, I started reading the same things to my eldest son, and he would listen spellbound to stories of Hercules and Pippi alike. Then I happened upon a wonderful Irish book, The King of Ireland’s Son. We read this together, both of us enthralled, and I recognised many of the plots from fairytales and legends from my childhood. The book is written in the most beguiling language; the adventures are both far-fetched and immensely satisfying; the feats astonishing. But for the duration of the book, the reader is in the King of Ireland’s son’s shoes, willing him to succeed. When we finished the book, my boy and I were both disappointed. We craved for it to be like the magic pudding; something we could feed on forever.

*

During my illness, my mind, like my body, has travelled an enormous distance. At times, it has felt as though my mind has left me, gone off to do its own thing while my body lies helpless and dormant. At times, it has seemed like a reversal. My mind has stayed still, my body has upped and left. But in the moments when the two meet and merge, the image I have of myself is the questing youth, and no plot is too far-fetched or impossible as a metaphor for what I am experiencing. Theseus, the Minotaur and the Maze; Orpheus and Eurydice; Atlas holding up the world; Arthur’s knights; the King of Ireland’s son. And while the quests these people (for they cannot be called characters, merely) undertake are always daunting and dangerous, there is a transaction made with the reader at the very beginning: trust the story, trust the youth, trust the teller of the tale. And we do. Until we come, hearts in our mouths, to the very end. After much sword-slashing, tree-hacking, monster-slaying, clothes-changing, sleep deprivation, hunger, thirst and fear, after our hero’s mind has nearly cracked with the strain and his body buckled under the relentless onslaught of mud, fire, beasts, hags, dragons, some kind of harmony is achieved. There is a balancing and a reckoning, and the hero (or Pippi) achieves his goal.

Like the mushroom, anchored by its stalk to the soil with which it fights, our hero’s success is tempered by the very struggles the quest sets up. And so it is for us who fall sick, seriously sick. It’s to do with the crossing over. The recognition that there are two worlds after all. Not life and the afterlife, but a world of before and a world of after. Before sickness and after sickness. We can never be the same again. It is not the recognition of the preciousness of life, the inconstancy and unpredictability that teaches us to be mindful of every moment. It’s not as easy as that. It is much more to do with fear and detachment. Before we had no idea what there was to be frightened of, nor that detachment was necessary. After, we know fear for what it is, we know the inconstancy of things, we know that ‘out there’ is in here.

I suppose the question is: do those heroes ever get to rest completely? Even if they’re told they will never have to quest again, isn’t there always the faintest possibility that they might be called on again to offer their services? That despite their best efforts, the hags are massing, the fires are burning, the beasts are crawling their way back from the ends of the earth? This is what it is like with illness, with cancer. As my breast surgeon cheerfully claimed, I will never know if I’ve survived breast cancer until I die in my nineties of something else.

Call it a dragon, call it a black shadow, this experience has altered me forever. I can never go back. I can never be what I was before. It’s a loss of innocence, a forty-something woman’s rite of passage. Not to be confused with ‘right’. No-one in their right mind would fight to be allowed to experience this. Yet it brings surprising revelations. The realisation that as a mother of three young boys it’s okay, even necessary, to slow down, to rest. That anger has been building like a pot of peas in boiling water, and needs to have the lid taken off and the heat turned down. That there’s time still to laugh, to go slow, that mess and chaos make lovely partners, not foes. That time hasn’t shrivelled, but expands in the most unexpected moments. That rage, if it’s acknowledged, can be put to good use, can become passionate and positive. That the relentless rushing needs to stop. That there is, always, tomorrow.

I’ve learnt some other things too. About this tenuous, beautiful thing we call life. That it’s exactly that. Tenuous. Fragile. Unexpected. Unpredictable. And fleeting. Think about that moth slipping out of its chrysalis. It won’t beat itself up worrying about when the end is coming. It will just get on with finding the flame.