UK writer with ME Susanna Clarke - press articles

This thread includes posts from threads on articles in the New Yorker and the Guardian. Any new articles should be posted here.

Quote from the New Yorker article: (https://www.newyorker.com/magazine/2020/09/14/susanna-clarkes-fantasy-world-of-interiors?)

"She has been given various diagnoses, including Lyme disease, Epstein-Barr virus, and chronic fatigue syndrome. Her most constant symptom has been overwhelming exhaustion, joined at times by migraines, brain fog, and photosensitivity, as well as by nausea, for which she now takes medication daily. At times, she said, bright sunshine has felt “like an oppression, a weight leaning on me”; she often retreats to a darkened room."

Goes on to say that in the latter part of the 2000s she was bedridden and developed depression and agoraphobia.

 

elusive??


Great that she was able to write another book with MECFS.

 

I like these New Yorker articles that you can listen to. Thanks for posting!

https://www.newyorker.com/magazine/2020/08/17/the-musk-ox-and-me

Totally not related but I enjoyed this recently.

 

Yes, read that one and the guy's activity was so great it seemed a fiction!

 

Maggie Stiefvater, a bestselling contemporary YA fantasy writer, comments on the article (Twitter thread):

https://twitter.com/user/status/1304898532919455745


https://twitter.com/user/status/1304899024349204480


https://twitter.com/user/status/1304899424150343681


ETA: Here's a blog article where Maggie writes about her own experiences as a writer with severe brain fog etc:
https://maggiestiefvater.com/the-years-without-words/

 

Her debut, Jonathan Strange & Mr Norrell, sold 4m copies - 16 years on, Clarke has written a second novel. She talks about chronic fatigue syndrome

https://www.theguardian.com/books/2...-from-the-world-bound-in-one-place-by-illness

Would love to read some more quotes, if anyone has a subscription and can share more from the article. I could read books when her first novel was published and remember I enjoyed hers.

 

I received the full article on PM. Thank you!!

Her chronic fatigue syndrome got mentioned a couple of times in the article:

Only months after the publication of her debut, Clarke became ill with what was eventually diagnosed as chronic fatigue syndrome. “I was doing a lot of travelling and promoting and getting on and off aeroplanes – the sort of thing I’d never done before. And then in the spring of 2005 I collapsed, and that was the beginning of it. It’s hard to remember an illness because it’s just a lot of nothing. It’s very hard to make it into a shape.”

Writing became torturous – “all the projects I’ve tried to work on while I was ill kept flowing down a lot of alleys, that was part of the illness” – and the JS&MrN sequel is still “a long way off” completion. “I think it may be a feature with chronic fatigue that you become incapable of making decisions. I found it impossible to decide between one version of a sentence and another version, but also between having the plot go in this direction and having it go in that direction. Everything became like uncontained bushes, shooting out in all directions. That’s the state that the sequel to Jonathan Strange is in. It’s almost like a forest now.”

...


Clarke is now “somewhat better than a few years ago, but often this is hard to remember”. While writing Piranesi, “I was aware that I was a person cut off from the world, bound in one place by illness. Piranesi considers himself very free, but he’s cut off from the rest of humanity.” Over the years Clarke had also felt “locked away. Unable to work, to be of any relevance. It’s changed with lockdown, but up until now there’s been this strong thing in our culture that you’re important because of what you do. So if you can’t do anything, you have no relevance. That was a very hard thing to deal with for a long time.”

The pandemic, of course, has challenged everyone’s sense of purpose. “The weird thing is that as other people’s lives have closed down, mine has opened up, because suddenly a lot of things are on Zoom and I can talk to people from my sofa. I know other chronically ill people have found the same. Once again you feel in opposition to the world – your experience is different.”

 

I haven't had this: “I think it may be a feature with chronic fatigue that you become incapable of making decisions".

Does anyone else?

 

At certain times, I found I couldn’t process the information required for certain types of decisions.

 

Not me, either.

 

In the sense that I can't achieve clarity and direction in my thinking and writing, then definitely yes. It's due to fatigue.

I was never good at brevity, but the more fatigued I am, the longer the paragraphs get. I often have to write a 500-word post in reply to something on here; then fathom out what I'm trying to say; then edit it down to a couple of sentences once I've done so.

I can't possibly get to the end of a train of thought without writing the first part down, I'd just forget it!

 

A feature of brain fog I think. Sometimes I need to use so much mental energy to simply remember what options 1 and 2 are I don't have any energy left to also remember the implications of both options, let alone assess their respective importance. If I'm lucky I have just enough mental energy left to remember I shouldn't be making any decisions in that state. It's not much of a problem when well rested, fortunately.

 

What the writer describes sounds somewhat like "paralysis by analysis," which is an inability to make decisions because there are so many options that it becomes impossible to weigh all the possible arguments for and against each one.

Ultimately, I think the solution is to select a reasonable option (after due consideration) and to just have faith that your subconscious is making the right decision.

Maybe that's harder for people with ME because brain fog and self doubt (abetted by medical neglect) may well undermine one's confidence in their decision making.

 

Not quite. I rarely have trouble making decisions, but I often tell my fiance to make the minor decisions for us, because I don't want to give them the energy they require. Each decision is a spoon and I want to keep my spoons for the important stuff.

However, I have a few friends with depression who describe this exactly and it does sound like something that could be due to brain fog in some cases. It's possible Susanna is just describing her own unique cluster of symptoms rather than a general one.

 

Yes.

No I don't think it's that at all. For me, some seemingly simple cognitive tasks just seem to require more energy than my brain can supply, at least, that's what it feels like. Trying to find an item in a cluttered drawer does it for me all the time. The longer I search, the more debilitated I become. I can't think straight, get aches in my neck and legs, and definitely can't communicate to anyone what's wrong. (My wife usually recognises the signs and asks what I'm looking for and takes over.) Writing or trying to organize my thoughts to (verbally) explain something to someone has a similar effect.

While the end result may look like "paralysis by analysis" and may even be said to be caused by so many options that it's impossible to weigh them all, in reality it's because the capacity to do the weighing is greatly diminished.

It seems clear some of us have more cognitive difficulties than others. I suspect those on the forum that do are not the most prolific posters.

 

There is some evidence of ME patients needing to use more areas of the brain to make decisions. So this all fits within that. Though your description sounds more like what I described (decisions requiring energy that isn't there) rather than a simple inability to make decisions. I guess it's all in the wording.

 

Yes. I would say poor cognitive stamina & impaired cognitive function are probably my most disabling & frustrating symptoms.

At a good point in time and in a good phase my brain can be as sharp and clear as ever for a very brief period. Decisions cam be made easily and quickly.

Once I've burned through the stamina or in a bad phase..... my ability to form coherent thoughts or even make simple decisions such as in response to "would you like a cup of tea?" becomes frighteningly impaired.

In a way it's a mirror to the extreme weakness or physical paralysis that affect some pwME.

The lights are on but no one's home.

 

When I was fairly mild I had something that could be described like this but is actually completely different, like many symptoms we have. They sound psychological when you try to describe them but they are not, it is a brain malfunction.

I would go into a shop but be unable to buy anything. It was like having a name on the tip of your tongue; it is there but you just can't get it out. I solved the problem by doing a mental walk round the supermarket and typing out anything I was likely to buy. My husband stuck it on card and laminated and I put it on my keyring.

I could look at my list and say yes or know. Basically, I was reducing the problem down a dimension so it was solvable. On those days I only had a certain amount to spend it added another variable and I had th eproblem again.

Similarly, I was unable to get dressed but I could get out items of clothing, lay them on the bed in order and then put them on.

When I had children I used a filofax where I had lists for everything - what to take on a school trip, clothes for summer, clothes for spring and it helped me cope with life with the added bonus that if i was too ill to do it I could just point people to the right page .

Doctors should ask what helps as that can be a better diagnostic tool than just asking about the problem. If it was any sort of anxiety, having a list of what groceries are available would not help.

We have road blocks to thinking.