In October 2016 I was in hospital. I had been ill for 11 years with something I called chronic fatigue syndrome, but in the previous six weeks I had been overtaken by a strange, sudden crisis. I was unable to eat \u2013 a\u00a0day when I managed a couple of biscuits was a good day; at times I trembled so violently that my voice shook; at night I was overwhelmed by dread.<\/p>\n
In the hospital ward a consultant gastroenterologist appeared.<\/p>\n
\u201cHow do you feel?\u201d he asked.<\/p>\n
\u201cI feel,\u201d I said, \u201cvery ill.\u201d<\/p>\n
This, apparently, was not the concise yet comprehensive answer that I had imagined it to be. He seemed to require something more. \u201cCan you describe it?\u201d he asked.<\/p>\n
I couldn\u2019t. That anguished, pressurised feeling \u2013 a sensation somewhere between burning and falling \u2013 that extended through my torso, my limbs, my entire body was\u00a0by\u00a0now so familiar to me, I was astonished that it didn\u2019t have a name\u00a0and that I didn\u2019t know it. How\u00a0could this be? I was, after all, a\u00a0prize-winning novelist.<\/p>\n
Frustrated I fell back on anger. Was\u00a0the doctor stupid? Didn\u2019t he know\u00a0what \u201cfeeling very ill\u201d meant?<\/p>\n
In her essay On Being Ill, Virginia\u00a0Woolf says, \u201clet a sufferer try\u00a0to describe a pain in his head to a doctor and language at once runs dry\u201d.<\/p>\n
At least I was in good company.<\/p>\n
I remember very well what I wanted to say to the doctor: \u201cI feel like I am about to fall off the world.\u201d I had the sense to realise that he would probably not be able to do much with this. What doctors need is a clear description of\u00a0something physical, but what the sufferer experiences may be as much emotional as it is physical \u2013 it may even have a spiritual component. It\u00a0is\u00a0very difficult in my experience to\u00a0separate the different strands.<\/p>\n
Nowadays, in the pit of my stomach there is a feeling I call anxiety. But when I ask myself what this sensation actually is, I realise that it consists of\u00a0almost nothing at all \u2013 a very slight pressure. Yet, in spite of its nigh-on non-existence, the emotional weight of it drags at my days, pulls them all askew and makes me feel, despite my\u00a0best efforts, constantly on edge.<\/p>\n
Virginia Woolf. Photograph: Alamy<\/p>\n
Woolf says, \u201cAll day, all night the body intervenes \u2026\u201d And that is true: all day, all night the body is talking to us; but not necessarily in a language we understand.<\/p>\n
Illness brings us up against the limitation of words, reminds us that what we experience will always be greater than the words we have to describe it. Dreams, silent meditations, experiences of God, moments of transcendence, moments we are aware of love, all of these evaporate into thin air, unless we scribble them down. At\u00a0the age of 30, Julian of Norwich had an illness. Believing she was dying, she experienced a series of visions of God. The visions lasted for only one night, but she spent the rest of her life trying to distil them into a form that could be understood by other people. (She wrote two different versions, to\u00a0be on the safe side.)<\/p>\n
There is hardly any sense of struggle in On Being Ill. Struggle is what\u00a0the healthy are doing, beyond the invalid\u2019s window pane. Ant-like, they are rushing to and fro, being clerks and\u00a0bus conductors and widows and lawyers. The shadowy figure at the essay\u2019s centre \u2013 the figure who might be Woolf or who might be us \u2013 seems almost delighted to have fallen ill. They float like a stick on a stream; they\u00a0are as gratefully irrelevant as\u00a0a\u00a0dead leaf being blown across a\u00a0lawn;\u00a0they watch the clouds mutate and\u00a0form pictures above a London entirely\u00a0unconscious of the beauty above its head.<\/p>\n
This was an insight that I too gained in illness, and it is part of what I tried to write about in Piranesi<\/a>: that there is\u00a0a whole world endlessly going on, endlessly being beautiful, regardless of whether anyone is there to see it or not. Where Woolf and I part company is in what this means. For her it was evidence of the stark indifference of\u00a0the universe to human beings: \u201cDivinely beautiful it is also divinely heartless.\u201d<\/p>\n For Piranesi, the central character of the book, and for me, the sheer profligate abundance of beauty is evidence of a universe intensely bound up with its creations. Piranesi walks through his world, cataloguing its contents, describing its wonders. This he considers his chief task in life.\u00a0\u201cThe Beauty of the House is immeasurable; its Kindness infinite.\u201d<\/p>\n double quotation markThe greatest joy of Woolf’s happy invalid is a sort of intellectual freedom, free from the shackles of other people’s opinions<\/p>\n But perhaps the greatest joy of Woolf\u2019s happy invalid is a sort of intellectual freedom. Cut off from the life of the busy bank-clerks and the bus conductors, widows and lawyers, they are free to read Shakespeare in a\u00a0new and thrilling way, a way not available to them when they were healthy. Finally they are free from the shackles of other people\u2019s opinions; they no longer care what anyone else has said about Shakespeare; they can read him and have their own thoughts.<\/p>\n As an ill person, you have gone down into a sort of underworld, sometimes oppressive, sometimes not; either way, what people say and think in the world above matters less and less. This can be very freeing for a scholar, a saint, a musician or an artist.\u00a0I remember Kathy Acker saying something similar when talking about her writing process. At least I think it was Kathy Acker; I\u2019m going back to the 1970s, so I can\u2019t be entirely sure. But whoever it was described a nocturnal existence; she wrote at night in order to be free from other people\u2019s thoughts.<\/p>\n To return to illness and language. If,\u00a0in one sense, language \u201cruns dry\u201d in the face of illness, in another sense it is desperately needed. I remember in\u00a0a discussion group long, long ago (I\u00a0think about the importance of story) a young woman saying that she had once been ill and that she couldn\u2019t get better until she was able to tell herself a story about what had happened to her. This struck me at the time as an important truth.<\/p>\n To take the simplest of examples: an\u00a0elderly woman I knew used to suffer from neck aches. Whenever this happened, she would tell herself the same story: \u201cI have this pain because I was silly and I sat in a draught from an open window.\u201d She might have been aware of the draught at the time or she might not. It didn\u2019t really matter; the existence of the draught could always be deduced from the existence of the pain, and as long as she was vigilant against draughts in the future, the pain wouldn\u2019t be able to return.<\/p>\n double quotation markA narrative makes illness seem rational \u2013 it gives the sufferer a measure of control<\/p>\n A narrative makes illness seem rational \u2013 and it gives the sufferer a measure of control \u2013 or at any rate the illusion of it. This is particularly true of the sort of chronic illness in the face of which poor doctors are often at a loss. There is no obvious course of treatment for fibromyalgia, chronic fatigue, chronic pain, long Covid and all the myriad forms of chronic illness. There is no drug to take that will restore you to who you once were. There is only narrative.<\/p>\n I know very well how grateful you feel to the doctor or therapist who provides a narrative to explain what has happened. And how upset and angry you feel when a different, perfectly well-meaning, doctor says something else or offers a theory that seems to threaten that narrative.<\/p>\n Of course one of the problems with being a writer with a long illness is that one can produce narratives without number. What would you like?<\/p>\n I can do you a revengeful, blame-apportioning narrative.<\/p>\n \u201cShe became ill after months of book tours, during which she crossed and recrossed the Atlantic on numerous occasions, all the result of her wicked publishers spending large sums of money on promoting her first novel \u2013 presumably out of sheer vindictiveness.\u201d (A journalist once spent a surprising amount of time and energy trying to get me to say this.)<\/p>\n I can do you a zoological narrative.<\/p>\n \u201cShe was bitten by a blood-feeding tick and caught Lyme disease.\u201d<\/p>\n I can do you a fairytale narrative.<\/p>\n \u201cShe wrote about fairies and now they have exacted their revenge and she lies ill of something mysterious and Lady-of-Shallot-adjacent.\u201d<\/p>\n I can do you a childhood-adversity narrative.<\/p>\n \u201cShe was told as a child that she would never succeed and indeed did not deserve success. Having achieved success, she promptly fell ill in order to\u00a0comply with her upbringing.\u201d<\/p>\n I pause here. The narrative of being told I did not deserve success pulls at my heart, not only for myself, but for others too. Because, of course, I wasn\u2019t the only girl of my generation to be told that. My school \u2013 a comprehensive on a run-down Bradford council estate \u2013 produced, as far as I know, only one\u00a0other writer, Andrea Dunbar<\/a>, a\u00a0playwright of extraordinary talent. I\u00a0don\u2019t think I ever met her, but she must have been a year or two below me. She died at the age of 29 of a brain haemorrhage, possibly related to alcoholism. My best friend during the\u00a0same period was a ridiculously talented musician who went on to have a hit record. She died before the age of 40.<\/p>\n You see, from one point of view, I got off lightly.<\/p>\n But if illness can be a story, so perhaps can the cure.<\/p>\n There is a bunch of interrelated therapies, all fairly recent, that share an interest in narrative. They are pain reprocessing, somatic tracking, polyvagal theory and others. The underlying idea is that in some people \u2013 and I stress some people \u2013 chronic illness might look like this: a very ancient and primitive part of the brain and nervous system believes it has detected danger, possibly a tiger or something like that, and so it produces pain or a whole range of symptoms in an effort to get the sufferer to close down and protect herself. The nervous system does this very effectively and it\u00a0can carry on doing it for decades. It\u00a0is\u00a0really very inventive. I feel that mine ought to be eligible for some sort\u00a0of prize.<\/p>\n It comes to this. A story you have on\u00a0some level believed \u2013 that the world\u00a0is fraught with danger \u2013 can be countered by a different story. Yes, the world is fraught with danger, but not everywhere, and not always, not here in this place and not now in this moment. You are safe.<\/p>\n So this is my narrative now, the\u00a0story of how I got ill \u2013 and perhaps, if I pay careful attention to it, I will be able to retrace my steps through the labyrinth of my own body and return\u00a0to safety.<\/p>\n