In October 2016 I was in the hospital. I had been ill with a disease called chronic fatigue syndrome for 11 years, but in the last six weeks I was struck by a strange, sudden crisis. I was unable to eat – the day I ate a couple of biscuits was a good day; Sometimes I trembled so violently that my voice shook; At night I became distraught with fear.
A consultant gastroenterologist attended the hospital ward.
“How do you feel?” he asked.
“I feel,” I said, “very sick.”
Apparently, this was not the concise but comprehensive answer I had envisioned. It seemed as if he needed something more. “Can you describe it?” he asked.
I could not. That painful, pressing sensation – a sensation somewhere between burning and falling – that spread up my torso, my limbs, my entire body, was so familiar to me by now, I was surprised it didn’t have a name and I didn’t know it. How can this be possible? After all, I was an award-winning novelist.
Frustrated, I became angry. Was the doctor a fool? Didn’t he know what “feeling very sick” meant?
In her essay On Being Ill, Virginia Woolf says, “Let a sufferer describe the pain in her head to the doctor and the language immediately dries up”.
At least I was in good company.
I remember well what I wanted to say to the doctor: “I feel like I’m about to fall off this world.” I had realized that perhaps he would not be able to do anything special in this. Doctors want a clear description of something physical, but what the sufferer experiences can be physical as well as emotional – it may even have a spiritual component. In my experience it is very difficult to separate the different threads.
These days, I have a feeling in the pit of my stomach that I call anxiety. But when I ask myself what this sensation really is, I realize it’s almost nothing at all – a very slight pressure. Yet, despite it being almost non-existent, its emotional weight tugs at my days, pulls them all askew and, despite my best efforts, makes me feel constantly on edge.
Wolf says, “All day, all night the body interferes…” And it’s true: all day, all night the body is talking to us; But not necessarily in the same language that we understand.
Illness brings us beyond the limits of words, reminding us that what we experience will always be bigger than what we have the words to describe. Dreams, silent meditations, experiences of God, moments of transcendence, moments when we are aware of love, they all evaporate unless we write them down. At the age of 30, Julian of Norwich suffered from an illness. Believing she was dying, she had several visions of God. These visions lasted only one night, but he spent the rest of his life molding them into a form that other people could understand. (To be safe, he wrote two different versions.)
There is no sense of conflict in On Being Ill. The struggle is what healthy people are going through, beyond the window pane of the disabled. Like ants, they are running around posing as clerks and bus conductors, widows and lawyers. The shadowy figure at the center of the essay—the man who might be Wolf or who might be us—seems almost to delight in falling ill. They float like a stick on the stream; They are as gratefully irrelevant as a dead leaf being blown across the lawn; They watch the clouds transform and form a picture over London, completely unaware of the beauty above their heads.
This was an insight I also had during the illness, and it is part of what I tried to write about in Piranesi: that there is a whole world endlessly going on, endlessly beautiful, whether there is anyone there to see it or not. What this means is where Wolf and I stand apart from the company. For him it was evidence of the universe’s utter indifference toward man: “Divinely beautiful it is also divinely heartless.”
For Piranesi, the book’s central character, and for me, the sheer abundance of beauty is proof that the universe is deeply interconnected with its creations. Piranesi wanders through his world, cataloging its contents, describing its wonders. He considers this as the main work of his life. “The beauty of home is immeasurable; its kindness is infinite.”
But perhaps the greatest joy of Woolf’s prosperity is a kind of intellectual freedom. Away from the lives of busy bank-clerks and bus conductors, widows and lawyers, they are free to read Shakespeare in a new and exciting way, a way that was not available to them when they were healthy. Ultimately they are freed from the shackles of other people’s opinions; He no longer cared what anyone else said about Shakespeare; They can read it and express their views.
As a sick person, you have gone into a kind of underworld, sometimes oppressive, sometimes not; Somehow, what people say and think in the world above is becoming less important. This can be very liberating for a scholar, saint, musician or artist. I remember Kathy Acker saying something similar when talking about her writing process. At least I think it was Kathy Acker; I’m going back to the 1970s, so I can’t be completely sure. But whoever described it as a nocturnal existence; She used to write at night to free herself from other people’s thoughts.
To return to illness and language. If, in one sense, the language “dries up” in the face of the disease, then in another sense it is desperately needed. I remember in a discussion group a long time ago (I think about the importance of story) a young woman said that she once got sick and that she could not get better until she was able to tell herself a story about what happened to her. At that time this seemed to me an important truth.
Take the simplest example: An elderly woman I knew was suffering from neck pain. Whenever this happened, she would tell herself the same story: “I feel this pain because I was stupid and I sat under an open window.” He may or may not have been aware of the draft at that time. It didn’t really matter; The existence of a draft can always be inferred from the existence of pain, and as long as she remains alert to drafts in the future, the pain will not return.
A narrative rationalizes the illness – and it provides the sufferer with some degree of control – or at any rate creates the illusion of it. This is especially true of the type of chronic disease that poor doctors are often at a loss to face. There is no clear path to treatment for fibromyalgia, chronic fatigue, chronic pain, Long COVID, and all the myriad forms of chronic illness. There is no medicine that can get you back to what you were before. There is only narrative.
I know very well how grateful you feel to the doctor or therapist who provides a story to explain what has happened. And how upset and angry you feel when a different, completely well-intentioned doctor says something else or offers a theory that seems to threaten that narrative.
Of course, one problem with being a writer with a chronic illness is that he can produce stories without numbers. What would you like?
I can tell you a vindictive, blame-apportioning story.
“She became ill after months of book tours, during which she crossed and re-crossed the Atlantic several times, all the result of her rogue publishers spending huge sums on promoting her first novel – possibly out of sheer vengeance.” (A journalist once spent a lot of time and energy getting me to say this.)
I can tell you a zoological story.
“She was bitten by a blood-feeding tick and contracted Lyme disease.”
I can tell you a fairy tale.
“She wrote about fairies and now they’ve had their revenge and she’s lying about something mysterious and Lady-of-Shalott-adjacent.”
I can recite to you the description of childhood adversity.
“Throughout her childhood she was told that she would never be successful and that in fact she did not deserve success. After achieving success, she immediately fell ill to follow her upbringing.”
I stay here. The story of being told that I don’t deserve success touches my heart, not only for me, but for others as well. Because, of course, I wasn’t the only girl of my generation who was told this. My school – based on a dilapidated Bradford council estate – produced, as far as I know, only one other writer, Andrea Dunbar, a playwright of extraordinary talent. I don’t think I ever met her, but she must have been a year or two below me. He died at the age of 29 from a brain hemorrhage, possibly related to alcohol addiction. My best friend during the same period was an extremely talented musician who made a hit record. He died before the age of 40.
You see, from one perspective, I got off lightly.
But if the disease can be a story, perhaps the cure can be a story too.
There are a group of interrelated treatments, all quite 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 – and I emphasize some people – Chronic disease can look like this: a very ancient and primitive part of the brain and nervous system believes that it has detected a threat, possibly a tiger or something like that, and so it produces a whole series of pain or symptoms in an attempt to shut down the victim and protect itself. The nervous system does this very effectively and may continue to do so for decades. This is really very inventive. I feel that my work should be worthy of some kind of award.
The matter comes to this. A story that you believe on some level – that the world is full of dangers – can be countered by a different story. Yes, the world is full of danger, but not everywhere, and not always, not here in this place and not right now in this moment. You are safe.
So this is my story now, the story of how I got sick – and perhaps, if I pay attention to it carefully, I will be able to retrace my steps through the maze of my body and return to safety.
This essay was originally commissioned for charleston festival.
