Today is World Lupus Day.
There’s a famous quotation from Flannery O’ Connor that sometimes floats past in meme form on my Facebook feed –
“Writing a novel is a terrible experience, during which the hair often falls out and the teeth decay.”
Wrong. That’s lupus, which is possibly the only thing I have in common with Flannery O’Connor.
Writing has always provided a break from all that stuff. Most of the time writing, and reading, is one of the best ways to forget the aches and pains and the everyday restrictions of living with a chronic illness. In my imagination, on the page, I can sometimes, almost live a different life.
Many people have suggested that I could write about being ill – not like this in a simple, rambling blog post but in a novel. I’m sure it would be possible, but mostly I haven’t wanted to do it.
I can’t imagine a private investigator with lupus. Okay, she might be able to make a necessary physical effort if she strays into a dangerous situation – but then the pace of the novel would suffer as she retires to her bed for three weeks after the lupus flares up and renders her immobile.
Not only would that be boring to read, it would be boring and painful to write.
I’m not a fan of the school of positive thinking that claims everything is for the best in this, the best of all possible worlds.
I try to find some positives – making the best of things is clearly the pragmatic approach. Being ill is not something I’ve chosen in any daft Law of Attraction sense. It’s not a way of running away from life’s difficulties. An extended tantrum. All these things have been suggested to me.
There aren’t many silver linings. I’ve had more time to read, that’s certainly one. I’ve also found people who’ve supported me while my life has been so constrained, and not only that but endured me being irritable and sharp-tongued. Having lupus hasn’t made me a nicer person – it’s just been a challenge to those who have to put up with me. I’m reasonably sure I could have been a more interesting challenge without being ill!
I look back at the novels I loved as a child, and I realise now how full of shit they are, at least on this issue.
In Little Women, sweet-natured Beth is the sweet natured and fragile girl who dies of scarlet fever. Her suffering is somehow linked to her sweet nature, as if it makes her a better person.
In Heidi – Clara is ill and all it takes to get her out of the wheelchair and to walk again is fresh air, goat’s cheese and having her chair pushed off the mountain by a boy jealous of the attention she gets. Being ill is all about attention-seeking…
What Katy Did is perhaps the worst of them all. Katy becomes temporarily disabled because she is disobedient. It’s a punishment. Her Cousin Helen, an invalid, comes to stay and teaches her that illness is ennobling. There’s a spiritual lesson in it.
(I’ve included a long extract at the end of this piece, just to show you how nauseating it is.)
Oddly, all the examples I can think of are girls. Are there any children’s stories for boys to learn these lessons? I wonder…
I know that everyone’s life is constrained, and that I sometimes indulge a fantasy that if I’d been well everything I could have done, I would have done.
I would have loved to travel the world. Even stuck in the same place I would have loved to get out more and ramble over the cliffs and in the woods. I’d love to be well enough to attend textile arts classes, maybe try silversmithing. To go off on writer’s retreats.
Reading and writing – these two activities save me from going mad with frustration. At my worst, I can make imaginary journeys through the words of so many writers. Sometimes I can even create my own escape route from reality.
To quote Neil Gaiman
“People talk about escapism as if it’s a bad thing… Once you’ve escaped, once you come back, the world is not the same as when you left it. You come back to it with skills, weapons, knowledge you didn’t have before. Then you are better equipped to deal with your current reality.”
Perhaps there’s something in that, although the examples of illness in fiction haven’t managed to turn me into Pollyanna. But at least for a while I have escaped.
After more than ten years of refusal, I’ve changed my mind.
Yet, after all the years of refusal to use my writing to face reality, right now I am working on a memoir. I’m doing the very opposite of escaping. I’m exploring in my own memories those adverse childhood indicators which are a known trigger for the development of autoimmune disorders.
So although the illness isn’t at the heart of what I’m focusing on, it’s certainly not something I can completely avoid.
It’s an interesting process – at times painful, as I’ve uncovered memories that I hadn’t repressed, quite, so much as carefully wrapped up and stored in the the closets at the back of my mind. It’s one way of dealing with stuff that’s too difficult to confront head on.
I remember when I saw my first counsellor in my late twenties, a wonderful man who helped me a great deal, I just wasn’t ready to face it all. I had nightmares of being overwhelmed – I remember a particularly vivid one of a volcanic eruptions producing a constant stream of lava I couldn’t escape.
It seems to me that keeping it all locked away was a good enough strategy at the time. But it was the equivalent of cramming all my emotional junk into a cupboard instead of doing a proper tidy up. It doesn’t take much to go wrong for the cupboard door to open a crack and all the pent up feelings to tumble out.
I have an intuition that the struggle to contain it all contributes to the hyperalert feeling that characterises every single lupus flare up. It must take a lot of energy, too. I’ve long described a flare as feeling that I have a skin too few, as if all my nerves are exposed and raw. When the flare goes away, it’s as if a switch has been flipped – a constant background hum just fades away, and all my senses relax.
The lupus also has a distancing effect – a numbness. Not being at home for my own feelings, in my own body, was pretty much bound to find its way out onto the page. The editor who sent my first rejection letter years ago mentioned this flaw. My Open University writing tutors both pointed out that I kept the emotional climax of my stories off the page. My agent had me rewrite those scenes in my novel, because I skipped over them too quickly. A friend reading a recent piece of the memoir pointed out that a digression back into the past had the same effect.
There’s a lot of research which shows that using art and writing to express painful emotions and memories can actually improve health – mental and physical. I really started circling around this memoir when I was working my way through writer Tim Clare’s brilliant Couch to 80k Writing Bootcamp last year.
For a long time writing provided me with a sanctuary – an escape. Now it’s time for me to do something a bit more brave and adventurous.
What’s the worst that can happen?
Maybe I’ll write a brilliant book.
Tim Clare’s Couch to 80k Writing Bootcamp is an excellent way to get into, or back into writing.
Also worth checking out is Tim Clare’s interview with James W Pennebaker
whose book Opening Up by Writing It Down, Third Edition: How Expressive Writing Improves Health and Eases Emotional Pain is in the pile waiting to be read
Adverse Childhood Indicators and Lupus – an article from The Lupus Trust
Excerpt from What Katy Did
(Available from Project Gutenberg)
“Why, Cousin Helen, what can I do lying here in bed?”
“A good deal. Shall I tell you, Katy, what it seems to me that I should say to myself if I were in your place?”
“Yes, please!” replied Katy wonderingly.
“I should say this: ‘Now, Katy Carr, you wanted to go to school and learn to be wise and useful, and here’s a chance for you. God is going to let you go to His school—where He teaches all sorts of beautiful things to people. Perhaps He will only keep you for one term, or perhaps it may be for three or four; but whichever it is, you must make the very most of the chance, because He gives it to you Himself.'”
“But what is the school?” asked Katy. “I don’t know what you mean.”
“It is called The School of Pain,” replied Cousin Helen, with her sweetest smile. “And the place where the lessons are to be learned is this room of yours. The rules of the school are pretty hard, but the good scholars, who keep them best, find out after a while how right and kind they are. And the lessons aren’t easy, either, but the more you study the more interesting they become.”
“What are the lessons?” asked Katy, getting interested, and beginning to feel as if Cousin Helen were telling her a story.
“Well, there’s the lesson of Patience. That’s one of the hardest studies. You can’t learn much of it at a time, but every bit you get by heart, makes the next bit easier. And there’s the lesson of Cheerfulness. And the lesson of Making the Best of Things.”
“Sometimes there isn’t anything to make the best of,” remarked Katy, dolefully.
“Yes there is, always! Everything in the world has two handles. Didn’t you know that? One is a smooth handle. If you take hold of it, the thing comes up lightly and easily, but if you seize the rough handle, it hurts your hand and the thing is hard to lift. Some people always manage to get hold of the wrong handle.”
“Is Aunt Izzie a ‘thing?'” asked Katy. Cousin Helen was glad to hear her laugh.
“Yes—Aunt Izzie is a thing—and she has a nice pleasant handle too, if you just try to find it. And the children are ‘things,’ also, in one sense. All their handles are different. You know human beings aren’t made just alike, like red flower-pots. We have to feel and guess before we can make out just how other people go, and how we ought to take hold of them. It is very interesting, I advise you to try it. And while you are trying, you will learn all sorts of things which will help you to help others.”
“If I only could!” sighed Katy. “Are there any other studies in the School, Cousin Helen?”
“Yes, there’s the lesson of Hopefulness. That class has ever so many teachers. The Sun is one. He sits outside the window all day waiting a chance to slip in and get at his pupil. He’s a first-rate teacher, too. I wouldn’t shut him out, if I were you.
“Every morning, the first thing when I woke up, I would say to myself: ‘I am going to get well, so Papa thinks. Perhaps it may be to-morrow. So, in case this should be the last day of my sickness, let me spend it beauti-fully, and make my sick-room so pleasant that everybody will like to remember it.’