Susanna Clarke: ‘I’ve been ill for 11 years. I felt like I was about to fall off the face of the earth’ | Fiction

Men October 2016 I was in the hospital. I’ve been sick for 11 years with what I call chronic fatigue syndrome, but in the past six weeks I’ve had a strange, sudden attack. I could not eat – a day when I managed a few biscuits was a good day; sometimes I was shaking so much that my voice was shaking. at night I was seized with fear.

A gastroenterologist appeared in the hospital ward.

“How are you doing?” he asked.

“I feel,” I said, “I am very sick.”

This, apparently, was not the brief but complete answer I thought it would be. It seems that he wanted more. “Can you explain?” he asked.

I couldn’t. That pain, that tension – a feeling somewhere between burning and falling – that ran through my hips, my legs, my whole body was familiar to me now, I was surprised it didn’t have a name and I didn’t know it. How is this possible? I was, after all, an award-winning novelist.

I was disappointed and returned with anger. Was the doctor stupid? Did he not know what “very sick” meant?

In her story called On Being Ill, Virginia Woolf said, “let a patient try to describe a headache to a doctor and language immediately ceases”.

At least I had good people.

I clearly remember what I wanted to say to the doctor: “I feel like I’m about to fall out of this world.” I had the good sense to realize that he might not be able to do much with this. What doctors need is to clearly describe something physical, but what the patient experiences can be as emotional as it is physical – it can have a spiritual aspect. It is very difficult in my experience to separate the different cables.

These days, there is a feeling in the pit of my stomach that I call anxiety. But when I ask myself what this feeling is, I realize that there is nothing – a little pressure. However, regardless of its absence, its emotional weight drags my days, drags them all and makes me feel, despite my best efforts, vulnerable.

Woolf says, “All day, all night the body intervenes…” And this is true: all day, all night the body speaks to us; but not necessarily in the language we understand.

Illness brings us up against the limits of words, reminding us that what we experience is always greater than the words we have to express. Dreams, silent meditations, experiences of God, moments of triumph, moments we know of love, all evaporate into thin air, unless we write them down. At the age of 30, Julian of Norwich had an illness. Believing that he was dying, he saw a vision of God. These visions only happened for one night, but he spent the rest of his life trying to distill them in a way that other people could hear. (They wrote two different versions, just to be safe.)

There is nothing wrong with On Being Ill. Dealing with what the healthy are doing, through an unacceptable window. Like ants, they run around, becoming clerks and bus conductors and widows and lawyers. The shadowy figure at the center of the story – someone who could be Woolf or who could be us – seems happy to be sick. They float like sticks on a river; They are thankfully useless as a dead leaf is revealed on the lawn; he watches the clouds shift and form images above London without ever realizing the beauty above his head.

This was a realization that I also gained from being sick, and it is part of what I tried to write about Piranesi: that there is a whole world that is eternally happening, eternally beautiful, regardless of whether anyone else can see it or not. Where Woolf and I share company is what it means. For him it was proof of the complete indifference of nature to people: “Divine beauty is also divinely merciless.”

For Piranesi, the book’s central character, and for me, the excess of beauty is a testament to nature’s inextricable connection with its environment. Piranesi travels through his world, writing down its contents, describing its wonders. He considers this to be his main task in life. “The beauty of the House is inexhaustible; its kindness is eternal.”

But perhaps the greatest joy of Woolf’s failure is a kind of intellectual freedom. Cut off from the lives of busy bankers-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. Finally they are free from the shackles of other people’s thoughts; they don’t care what anyone else has to say about Shakespeare; they can read him and have their own thoughts.

As a sick man, you went to the underworld, sometimes oppressive, sometimes not; In any case, what people say and think in the upper world is limited. This can be very comfortable for a student, a saint, a musician or an artist. I remember Kathy Acker saying the same thing about her writing style. At least I think it was Kathy Acker; It’s going back to the 1970s, so I can’t be completely sure. But those who were said to be at night; he wrote at night so he wouldn’t have other people’s thoughts.

Back to disease and language. If, in one sense, language is “dry” in the face of disease, in another sense it is very important. I remember in a discussion group a long time ago (I think about the importance of stories) a girl said that she was sick and could not get better until she told herself the story of what happened to her. This struck me at the time as an important truth.

To take a simple example: an elderly woman I used to know had a sore throat. When this happened, he would tell himself the same story: “I feel pain because I was stupid and sat at the open window. He must have known about the writing at the time or maybe he didn’t know. It didn’t really matter; the presence of the writing can always be known because of the pain, and as long as he was alert against the writing in the future, the pain will never return.

The story makes the disease seem rational – and gives the patient the power to control himself – or in any case its illusion. This is especially true for chronic diseases that poor doctors often miss. There is no known cure for fibromyalgia, chronic fatigue, chronic pain, chronic Covid and all types of chronic illnesses. There is no medicine you can take that will bring you back to the way you were. There is only one story.

I know very well how much you appreciate a doctor or therapist who gives a story to explain what happened. And how angry and angry you get when a different, well-intentioned doctor says something or offers a theory that seems to threaten the issue.

Of course, one of the challenges of being a chronically ill writer is that one can produce articles without number. What would you like?

I can give you a story of vengeance, of guilt.

“He became ill after many months of book tours, during which he crossed and crossed the Atlantic several times, all the result of his bad publishers spending a lot of money to promote his first book – maybe for revenge.” (One reporter spent an incredible amount of time and energy trying to get me to say this.)

I can tell you about zoology.

“He was bitten by a blood-feeding tick and contracted Lyme disease.”

I can tell you a fairy tale.

“He wrote about fairies and now he’s taking revenge and he’s lying about secrets and the Lady-of-Shallot-next-door.”

I can tell you a childhood-misery story.

He was told as a child that he would never succeed and that he would never succeed.

Let me stop here. The story of being told I wasn’t supposed to do well tugs at my heartstrings, not just for myself, but for others as well. Because, of course, I wasn’t the only girl of my generation to be told that. My school – fitted out on a dilapidated Bradford council estate – was designed, as far as I know, by just one other author, Andrea Dunbara playwright of extraordinary talent. I don’t think I ever met him, but he must have been a year or two below me. He died at the age of 29 from a brain haemorrhage, possibly due to alcoholism. My best friend at the time was a very talented musician who had a great reputation. He died before he was 40 years old.

You see, in a sense, I got off lightly.

But if disease can be the issue, maybe its medicine can cure it.

There are a bunch of related products, all recent, that share the same interest and news. It is a pain reliever, somatic tracking, polyvagal theory and others. The real idea is that in some people – and I emphasize some people – chronic diseases can appear like this: the oldest and oldest part of the brain and nervous system believes that it has detected a danger, maybe a tiger or something like that, and therefore it produces pain or many symptoms in an attempt to make the patient shut down and protect himself. The nervous system does this very well and can continue to do this for many years. It’s artificial. I feel mine deserves some kind of award.

It comes down to this. A story that you believe on one level – that the world is full of dangers – can be challenged by another story. Yes, the world is full of danger, but not everywhere, not always, not here, not now. You are safe.

So this is my story now, the story of how I got sick – and maybe, if I listen carefully, I will be able to retrace my steps through the labyrinth of my body and return to safety.

This article was originally submitted Charleston Festival.