On Christmas Eve 2013, with hail falling on Norwich, I set out to jog three miles through the storm on the path beside the river. The spire of the cathedral was obscured by pearly cloud; snowdrops speckled the riverbank; it was pleasant to feel the little cut of ice on cheek. All this I recall with wonder, for that moment has crystallised in my memory as youth’s last day before, at the age of 34, old age struck me like a brick in a sock.
I cannot say when I first began to realise I was ill, for it came on me surreptitiously, with each new symptom readily explained. I was tired, probably; I was anxious, that was it: cared too deeply about the fate of my debut novel, of the work in progress. Yet by the following Christmas I felt as though I were a badly stitched garment coming apart at the seams. I was no athlete, nor had I ever been, but I’d never been troubled by anything more serious than an asthma cough, and had always thought of myself as rather like a shire horse: healthy, stolid, large of hindquarter and small of foot; willing to walk any distance in any weather, given the promise of a nosebag. How could it be, then, that washing my hair exhausted my arms until I let them fall by my side? How could a brief walk weary me to tears? Why did I wake at midnight, at two, at four, at six; why did I topple against the arm of the sofa at nine in the evening, and ask, like a child, to be put to bed? Why did I ache from heel to hip, with that dreary pain, hardly worth a single Nurofen, that comes when one has been chilled to the marrow? By the time 2016 put its malevolent head around the door, it occurred to me that I’d been in pain every day for 18 months.
In due course my mind, too, began to suffer: it felt sometimes hectic, sometimes hazy. I recall travelling to Berlin and pacing the featureless platforms of a railway station for two full hours in a grinding, dreary panic, wholly unable to summon up my wits, in tears, beseeching passersby for help, and too ashamed to phone the friend I was visiting and reveal that I was weak, despairing and confused. Perhaps I ought to have realised then that all was not well; that something in my body had begun to affect my ability to reason. Was it possible to lose one’s intellect? The prospect appalled me. I Googled (illness loss IQ), but found nothing satisfactory. On I went, wilfully and stupidly ignorant, the fabric of my body fraying. Within a week I’d developed night sweats that caused pools of water to collect in the declivity above my collarbone, and left my hair greasy at the scalp. The ache in my legs grew worse: it woke me from my nightmares.
Still I made no attempt to see a doctor. What was the point? There were three-week waits for appointments, and by then I’d be dead, or cured. Meanwhile, curious new symptoms appeared: I was woken early each morning by a shattering headache and with a racing heart. Menstruation grew sluggish, and black, and almost ceased; I developed an odd seething sensation in my head, as though an intolerable buildup of pressure had begun. Standing tranquilly in the kitchen stirring tea, I’d suddenly grimace through gritted teeth, raise both hands to my face with fingers clawed and rigid, and judder as though in the grip of a dreadful, wordless panic. I could never, afterwards, say why. Sometimes I’d scrabble at my throat, thinking the clothes I wore were too tight; and find nothing there, nothing touching me at all.
It was the grimace, the clawed hands, that in April saw me finally seated facing a GP, who noted my racing heart. “What do you do?” he asked, and I wished I had some useful occupation with which to justify my sickness. “I wrote a book,” I said. “I think it broke me.” Placidly, he inquired further. Did I sleep? I laughed: oh, I did not. Did I use social media? Well, as to that: a bit, I supposed. A fair bit. Quite a lot, come to think of it. And was it stressful: the work of a writer? Was I anxious? I told him that each sleepless night I lay reading over and over again every one-star review of my work on Amazon, on Goodreads, until I had them by heart. “I’m told I shouldn’t look,” I said, “but it’s like I’m walking down a corridor lined with half-open doors, and behind them people are talking about how much they despise me.”
“Your work is not you,” he said. “Those are two different things.” And privately I laughed, for I would not want to exist without writing, and my writing could not exist without me. We are, at best, parasite and host. “If somebody hates my book, they hate me,” I said. “Everyone who rejected my book, rejected me.” He shook his head. Evidently I was suffering from anxiety. I required long walks. No social media. Meditation, or perhaps a reading of a devotional text.
I nodded gratefully: of course! I’d brought it all on myself, with my ambition, my ardent desire to be loved, my instant contempt for any achievement, once achieved. I was raised on a diet of original sin, and readily accepted that in this, as in all things, I was at fault. He handed me a plastic phial in a plastic bag: all the same, blood should be taken. An MOT, so to speak. Blood drawn, I made my way home, and the following morning tried my hand at devotional reading and meditation. It was not a success: I’d chosen to read the second Psalm, which is not calculated to soothe the troubled mind.
Three days passed, and I was summoned back to the surgery. My blood had been examined and the trouble was found. It was my thyroid, the GP said: it was overactive, and I had thyrotoxicosis. It explained the racing heart, the insomnia, the choking sensation; the headaches and trembling hands. Probably I had an autoimmune disorder known as Graves’ disease: further tests were required. Then he looked at me. “I saw what you were like,” he said, and made a gesture indicating liveliness, volubility. “You’re very… you know. But I thought that was just the way you were.”
I was given beta blockers, to calm my racing heart, and Carbimazole, to suppress my frantic thyroid. I was warned that my eyes might begin to swell, and that two brazil nuts in the morning might provide sufficient selenium to minimise the risk. At the hospital, the endocrinologist was brisk, but not unkind. “I’d have known at once, anywhere, that you were hyperthyroid,” she said. “The way you are. Your eyes.” There it was again, the suggestion that my behaviour was governed not by character but by sickness. I’ve always been like this, I wanted to say. There’s no donkey whose hind leg could withstand my talking.
“My eyes?” I said. Oh yes: they were bulging. I lightly touched an eyeball through an eyelid. And yes, it was Graves’ disease, she said: they’d found the antibodies in my blood. I required regular blood tests and months of medication in ever-decreasing doses, until – by the new year, perhaps – I was on a scant maintenance dose and would be more or less myself. If not, other treatments were available, though only the removal of the thyroid altogether could constitute a cure.
Naturally, I set about mining the internet for information, from medical papers to despondent posts from Graves’ sufferers in the US, who, unable to fund treatment, had lost their health altogether, and with it their livelihoods. It seemed my immune system was attacking my thyroid, having made that very human error of mistaking something good for something bad. I was consequently flooded with thyroxine, the hormone that controls metabolic rate and affects almost every cell in the body. My muscles were weakening, my bones thinning, my heart was overstimulated; it was making me agitated, sleepless and probably infertile.
Christina Rossetti had had it, and was driven quite mad by the loss of her beauty, and by her inability to conceive. George Bush Sr had it, and rather improbably, so did his wife; both were cured by drinking a preparation of radioactive iodine (meanwhile, their dog, Millie, had lupus). I grew familiar with every Google image of Graves’ patients whose eyes had bulged clean out of their sockets, and often wondered if the optic nerve had any elasticity to it. It was impossible to say what had caused my own body to turn against me: stress, perhaps, or just one of those things.
In the weeks after diagnosis, before the medication set in, I worsened. My swollen thyroid pressed against my jugular, increasing pressure in the blood pulsing past my ears, so I was kept awake at night by the sensation of some spiteful imp crouched on the pillow, tapping away at my head. My eyes could not tolerate any movement in the air: ordered to wear sunglasses, I bought a pair of Ray-Bans, and lost them the following week. My metabolism increased to that of a lanky 15-year-old boy: I was hungry, with a deep hunger that made me angry when denied food. I’d never been more gluttonous or more indolent, but each day I grew thinner as though I’d been cursed. To venture out required drawing on an empty bank account: if I left the house – lipstick on and earrings in, these fragments shored against my ruin – I repaid the debt, with interest, in the following days.
I recall the launch of my second novel as though it were half-dream, half-nightmare, in which everyone I’d ever known had been inexplicably brought together, to plunge at me out of a hot haze, greet me and then recede slowly against far distant walls. As I gave a speech for which I’d not prepared, I gripped the back of a wicker chair to prevent myself from stumbling, and all the while sweat poured down my legs, as if I’d become helplessly incontinent. That night, my heart took its revenge, breaking through the beta blockers, racing at a gleeful trot that for days had me sleepless and trembling.
For three months I could not read, a catastrophe that sent me to Twitter, pleading for books best suited to an enfeebled mind. Russian authors were warmly commended as an excellent source of comfort to the comfortless, or perhaps I could try the novels of Jean Rhys, which at any rate were brief. I laughed sourly, and lay watching Gilmore Girls for hours.
One evening in the bath, my heart set up a frantic pounding, then paused, as though waiting for a signal; then swiftly knocked again three times. I vaguely wondered how I might annotate it on a musical stave – a run of semiquavers, a minim’s pause, and triplets: presto agitato! Then I thought of the black double bar that marks the music’s end, and silence. Was I having a heart attack? It seemed a bit undignified, dying in the bath like Marat, without the glamour of the assassin’s knife, and with my legs unshaved. In A&E there was that grateful slide into infancy that sickness brings: “You’ll be all right, love, let’s pop that top off, shall we? There, just a little scratch.” And I was, of course, all right: it was only that I required more drugs, a larger dose, another pill in the palmful I took each morning.
Later, as the medication I took each day slowed my metabolism to a crawl, I inflated as slowly and steadily as an airbed on a campsite. I said to my sister, “I’ll stop taking the tablets, and be thin as a lath by Christmas.” She did as older sisters must, and tore me off a strip: would I rather be ill, and risk damage to my heart, and be thin, when all my life I’d been plump, and healthy as an ox? I’d never thought myself vain, but it seemed I was: I scrutinised my face for hours, observing the newly acquired padding that sagged at the jaw, giving me a despondent look; the grey and grainy skin; the eyes that had begun to bulge, so that the whites were visible below the pupils. It was the unheimlich, the uncanny: the body I dwelt in was my home, of course it was, but in each respect it was faintly awry. My phone contained evidence of a bonny, bright-eyed, laughing girl: who was she? I did not recall having ever met her. I walked on stage at literary events wearing my body as if it were a coat I hadn’t chosen and didn’t like. Did they all see the clawing of my hands, the sweat that ran behind my ear, the swelling thighs and stomach? Did they despise me for it, as I despised myself? “I looked very well, once,” I wanted to say.
Shortly I was taken over by a great sense of shame. I was not that ill, after all: it was not leukaemia; I had not lost a leg. Meanwhile, a friend’s surgical wound split open like rotten fruit, and another was treated for cancer with the courage and good humour I could no longer summon on an overcast afternoon. In comparison, my own disease seemed hardly worth mentioning, and I grew ashamed of my despondency, of my bad temper, ashamed to so bitterly resent my expulsion from the Vale of Health.
By imperceptible degrees, I began to get better. One morning I woke and realised I’d slept all night without waking: this for the first time in more than two years. My heart recovered its old phlegmatic beat, and gradually I withdrew from beta blockers. I began at last to read, the curse broken by a thriller and by doses of the diaries of Virginia Woolf. Late one night at Gladstone’s Library, I realised with a happy shock that I was awake, alert, laughing; that I’d drunk my third glass of good red wine, and lay carelessly sprawled on the floor, unable to summon even the memory of the old ache in my legs. “Oh!” I said. “Oh!” and began to laugh, helplessly, and then to cry a little, unable to explain what bliss it was simply to be myself again: Sarah Grace Perry, native of Essex; untidy, voluble, expansive; more prone to laughter, I think, than tears; childishly demonstrative; mistrustful of rest. My consultant writes: “You have responded very well to treatment, and I’m very pleased.” I’m as proud as if the credit were mine, and not that of NHS phlebotomists, pharmacists, consultants; of the GPs, nurses and receptionists I saw so often last summer. My eyes have receded, and lost that startled look; the old familiar shape of my face has returned; I stand naked by the mirror and put my hand to the dip of waist above hip, and think: by spring, it will be as it was. Last month, I put my trainers on and half-walked, half-ran the old river path I once loved, and which I’d almost persuaded myself was no longer there.
Still, I am not as I ought to be – though I know how lucky I am to escape, at least for now, the poisonous radiation that for ever destroys the thyroid, the elegant scar of the thyroidectomy. I am weak, and seek the help of men to hoist luggage on to luggage racks; I lag behind friends as they walk. My heart I’ve come to think of as a nervous cat that startles easily and requires soothing; at night, I quell my ringing ears with the voices of Alan Partridge and Ed Reardon. I am conscious that I do not have permanent leave to remain, here in the land of the well, for I am not cured, I am “managed”. I hold a temporary visa, contingent on conditions I cannot control, and find I am waiting for it to be revoked.
It is necessary for me to consider what I’ve learned, to put these dreary months to use. And what I’ve learned is this: how little I understood the daily privations of chronic illness, and how often I’ve failed to be kind. I think of my mother-in-law, who endured rheumatoid arthritis for 40 years and was the best of women. I adored her, but I was in rude health, and often impatient; and now I grieve that I can’t stand by her chair again, and comb her hair as she often asked, only with greater understanding. And I recall with shame how I’d roll my eyes as the elderly fumbled and faltered at cashpoints, or how I’d audibly tut as I bustled past those walking slowly on pavements. I was handed a lesson in empathy, and it was deservedly harsh.
So I’ve been thinking, too, of a poem of Larkin’s, which was always pertinent – now more than ever, as civilisation cracks like thin ice over a deep black lake: “We should be careful of each other, we should be kind, while there is still time.”
• Sarah Perry is the author of The Essex Serpent (Serpent’s Tail), which was Waterstones Book of the Year 2016 and shortlisted for the Costa novel award.
