03. On ME Representation - Interview with Laura Elliott

Welcome to a special interview with Laura Elliott, author of the gripping near-future thriller Awakened. We dive into the story’s chilling world of sleeplessness, collapsing civilisation, and a small group of scientists grappling with the consequences of their own creation - and explore the book’s thoughtful representation of ME and chronic illness.

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📚 Books discussed: Awakened by Laura Elliott

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TRANSCRIPT

Rupert

Hi everyone and welcome to the Pedantic Zebra Book Club. I’m Rupert Higham and tonight we’re excited to welcome Laura Elliott, author of Awakened and here’s a copy to prove we’ve read it. Awakened is a chilling near future thriller where sleeplessness becomes a curse, civilization collapses and a small group of scientists must confront the

consequences of their own creation. It’s a gripping, unsettling and very deeply human story and we’re going to focus the representation of ME in particular which is thoughtfully woven into the story but we’re going to talk about other things too. A quick note before we start we’ve moved our book club over to Fable and you can

join Pedantic Zebra our disability and chronic illness reading collective there by downloading the Fable app and finding us in the club section. So let’s dive in and welcome Laura to talk about Awaken. Hello, Laura. Hi, lovely to see you. Thanks for coming.

Laura

It’s lovely to be here. Thank you very much.

Rupert

Great. Well, can I just start by saying I really enjoyed this book, which was a huge relief.

Laura

It’s a huge relief for me as well.

Rupert

And I think, as I was saying to you a little earlier, in a publishing age dominated now by rigid genres with a tight script, it’s really daring in its topic and style in a really refreshing way. And for me, it was genuinely surprising and thought-provoking all the way through. And as we’ll discuss,

it’s unflinching and utterly countercultural in exploring chronic illness at length in print. And for that and everything else, thank you and congratulations. How does it feel to see it out there in print getting great reviews in the New York Times?

Laura

Deeply surreal, I think, is the answer to that. But thank you for being so kind about it. Yeah, like you say, it is very strange to see chronic illness weaved into a genre story like this. But I was writing it for many years when I was housebound with Emmy. And so it was a natural progression, I think.

And I wasn’t always sure it was going to get finished. So yes, to see it in bookstores and, like you say, being reviewed for The New York Times. Is is deeply odd.

Rupert

Yeah. And great. Yeah.

Laura

Odd in a great way.

Rupert

So tell me about some of the influences on this book. Where did it come from?

Laura

The very earliest influence was when I had just become too sick to work. And I think like many people with chronic illness, I’d worked right up until the moment I couldn’t. And I thought very clearly, God... it doesn’t matter how sick I am, they’re going to want to make me work until I can’t, until I die.

If they could, they would steal sleep from me if it would make me more productive. So that was the very base level idea. And I sort of had that thought and thought, oh, Actually, that’s quite a nice concept for this kind of story. And then as I progressed through thinking about it, obviously,

scientific hubris and the problems with systemic medicine, all of that fed into, you know, Frankenstein, to the Gothic, to... all of these other little influences that started to draw in the more I thought about it. So we went from a very depressing personal thought in a very depressing personal situation to sort of widening into the literary canon,

I think, as it went on.

Rupert

Okay. That’s interesting. I mean, it’s a light strand in the book, isn’t it? But it’s interesting that you mentioned it first. You’re suggesting there’s an anti-capitalist or at least anti-exploitative capitalist strand running through there. They would steal sleep off me if they could. Yeah.

Laura

Yeah, there is. It is subtle in the book. It was it was the starting point, but not the point that came to the fore as clearly. I think it finds its home more obviously in the anonymous billionaire being locked in his tower. Because of course he funded a chip to kill off sleep, because why wouldn’t he?

He’s a billionaire. And if more people can work, that’s more money for him. But it is subtle. And I enjoyed locking him in a tower, though, because I was thinking... about Gothic tropes. And I thought, well, there’s the mad woman in the attic. And I thought, well, who actually deserves to be locked in an attic?

And I went billionaire. And that’s why the anonymous billionaire is locked in a tower, because I thought, A, he deserved to be there. And B, it was the anti-capitalist strand. It was, you know, look what you’ve done and now you’re getting punished. Sorry about that.

Rupert

And I think you kindly chose to fill that tower with his own excrement too, if I remember rightly.

Laura

Yeah, he does lose it a little bit. Again, that was a little bit subtle. I liked the idea that Vladimir was in some way haunting him a little during his time in the Tower, and that maybe at the beginning of the book he hadn’t quite gone downhill that far,

but by the end of the book he certainly had.

Rupert

Yeah, yeah. And again, there’s an interesting parallel there. We know chronic illnesses particularly affects women more than men. And if we think about, you know, if we look at the history or the rise of feminism, when women’s labor became available in the marketplace, instead of it leading to people having easier lives or more enjoyment, it was, ah,

we can double the price of houses and let you both work for them.

Laura

exactly and i think we see the same thing with the progression of technology as well technology should have made life and work much much easier instead what’s happened is we can now work all hours because technology has connected us to be able to do that so instead of making it easier it’s made it much much harder and

devalued a lot of work um so yeah there’s there’s definitely an historical thread

Rupert

in that way great okay that’s great so um Getting a book published when you put a proposal out there that says this book centers on chronic illness and people’s experience of it. How did publishers and agents, how did they all engage with it?

How did the conversation go as you tried to get across what you wanted to write about?

Laura

So the interesting thing with fiction is that you have to have written it first. With nonfiction, you can pitch it with just the idea. With fiction, the book has to be written first. So I wrote Awakened over the course of about six, seven years, very, very slowly. These were the years when I was most sick as well.

So I was... writing a lot from bed and all of that. But I was very, very lucky with how I managed to sort of shoehorn myself into the industry. I’d done some journalism in the disability and health space before, because that was what I trained in. And I was being followed on Twitter, I hasten to add,

not in a stalking situation, by an editor at Angry Robot Books called Simon Spanton. And I had mentioned, I think, on Twitter that I was writing a book about sleepless monsters. And I’d mentioned that years ago. And Simon had popped up and said, hello, actually, that sounds interesting. Let me know when you finish it.

So when I did finish it, I started pitching to agents and then I had a horrible moment where I thought, God, what if this isn’t publishable? What if I’ve just wrote complete nonsense? So I sent Simon a vaguely panicked email saying, I know it was years ago, but you did say you wanted to read this.

Would you mind reading it and telling me if I’m barking up the wrong tree entirely here? um and he very sweetly sent me an email back and he said do you want me to read this as an editor or as a friend and I said friend tell me as a friend what are we

doing and about three weeks later he came back to me and he said I’m putting my editor hat back on I love this book can I take it to an acquisitions meeting at which point I freaked out because I was on submission to a number of agents and hadn’t had a proper bite yet um and

One of the agents I was on sub to was Caro, who is now my current agent, and I submitted to them because they are also chronically ill and they have a number of disabled authors on their book. So I sent them a panicked email and said, Caro, look, I’m going to level with you.

There’s a publisher interested and I don’t know what I’m doing. Does this book sound interesting to you? And bless them, they replied to me and said, actually, I was about to request a full because you only send an extract. Send me the full. Let me see. And then in the space of about six weeks,

I’d gone from having no agent and no publisher to having both an agent and having just signed the publishing deal. with Simon so that was all an odd mix of accident and planning I think it’s you know you can’t you can’t account for for an editor being in the right place at the

right time with the right you know all of that it was it was very much a stars aligning moment

Rupert

Wow. So, I mean, so not too much. And how did it progress from there? Because that’s still the first, it’s a big first step, isn’t it? Or the first leap, let’s call it. But even then, as you work through the editing process, was there back and forth about the prominence, the content, the portrayal of ME?

Laura

Yes. Although, again, I was very lucky in my editor because Simon had followed me for so many years on Twitter. He’d seen an awful lot of my advocacy work. So he knew, I think, quite intuitively that there was only so much I was going to strip out when it came to theME.

We did take a chunk out towards the end of the book. I had a section originally on the PACE trial authors and PACE. how all that had come about. And Simon made the very completely valid critique that where it landed in the narrative just slowed everything down to the point where you think...

Rupert

Ironically, yes.

Laura

Yeah, exactly. Ironically, that slows things down. And I said, yeah, do you know what? This isn’t a history book. It’s meant to touch on the history, but it doesn’t necessarily have to come up to the current day. So we stripped the bit about the pace trial out,

but that was the only bit that we did do some major edits on. And I think the book was better for it. I’d like to write something about the post-trail in the future, possibly in a non-fiction book, but that was the only bit we took out in the end.

Rupert

Yes, in the real-life horror genre.

Laura

Yeah, exactly. It’s like true crime, but it’s... Yeah, true crime, that’s the one.

Rupert

So in other words, you kind of basically blackmailed them to leave it all in With the threat of withdrawing your brilliant writing.

Laura

I would love it if I could say that I was that steadfast, but I was very lucky in Simon knowing what I wanted from it.

Rupert

So you think you’re kind of... They saw how integral it was to the story and they realised that that was just going to have to be the writing that went through the rock.

Laura

Yeah, I think so.

Rupert

Yeah, great. So what drew you to... centre a mother with Emmy as a sort of dominant but off-page presence rather than placing her at the centre of the narrative or you know at the action as it were.

Laura

I think when I was writing it because I was housebound at the time and I did think I could probably write a protagonist that has my level of Emmy which was not able to go out but able to function in my house at the time.

But what I really wanted to do was portray the very severe end of ME. I wanted, if I was going to write a book where I was sort of, it was a fictionalized narrative, but was also hoping to educate people a little bit about the history, about the severity, about all of these things.

I wanted the very severe patient to be in there. nigh on impossible to write a very severe patient as the protagonist if they also had to be the scientist who was trying to cure it. I’m sure possibly a better writer than me might have been able to find a workaround around that.

But I decided that it would have to be the person caring for them, who was the actual protagonist. Having said that, I do think that it became quite interesting to look at how Thea began her life as a young carer. being not as equally harmed, but harmed by the medical disbelief around this illness.

And then by the end of the book, what we actually see is that in her drive to cure it without looking properly, she’s become the thing she hated. She’s quite literally stopped seeing her mother and I’m not going to spoil her, but you know exactly what I mean when I say she quite literally doesn’t see her

mother anymore. She becomes very much part of the problem within this system. And I thought that was that ended up being quite a nice little commentary on how even good and well-meaning people, when they enter into a damaged system, can become damaged by it in turn and become part of the problem.

Rupert

Yeah, how interesting. And as someone with close experience of people dealing with the medical system and its treatment of chronic ME, there’s that very vivid scene where Thea describes going to the doctor with her mother and how she’s treated. My goodness, that rings true to many people in our community.

Laura

I’m going to level with you. That is the one bit in the book that is verbatim taken from real life. It was word for word what a doctor said to me. And I also did describe him. The piercing blue eyes were in fact his. I can’t remember his name now. I can remember everything about him.

I would know him if I met him on the street, but I cannot remember his name. um but he has been immortalized forever in Awakened um and it is interesting that it rang true because I think so many patients have very similar stories and I did

feel a little bit of catharsis in writing him into that book and saying hey look

Rupert

your pen tip was particularly sharp that day yeah poison pen in that sense yeah and you know I won’t go into up into our own own stories but I think just having been in a sort of equivalent one, equivalent situations. What you have, I think, you know,

what you’ve recognised and what you’ve said about how you’ve portrayed theory in different aspects in different parts of the book, you know, that doctor’s probably lovely.

Laura

Yeah, it’s frustrating.

Rupert

In other circumstances and is trying really hard to help people.

Laura

And just isn’t educated enough on the thing that you’ve gone to see him about. And that’s what’s frustrating. Although today I was in my little local bookshop and my favourite doctor, who I will follow around the country if he moves, it’s taken me years to find a brilliant GP and I adore him.

He walked into the bookshop and I thought, oh, Christ, please don’t read Awakened because it’s really not complimentary about medicine. But you are not the problem. You are brilliant. I don’t want you to read this book and know that I wrote it because I was signing copies at the time. And you’re always agreed anyway. Yeah, exactly.

I think he’s got brown eyes. It’s fine.

Rupert

It’s not you.

Laura

So, no, I did have a bit of a moment. It’s like, OK, I want most doctors to read this book, but I don’t want him to read it.

Rupert

Not yet. Please. So, I mean, I think we’re alluding to this now, but, you know, so the day to day existence with ME is complex and it’s to express and for others to relate to. What aspects of the illness did you feel that it was important for you to honour in the book?

Laura

Like I said, I was really focused on the severity at the very severe end because I think most people don’t know still how severe this illness can get. So I wanted to portray also... the kind of labile nature of it. I think Thea recounts there are months when her mom manages to take a walk on the beach.

There are also months when she’s in bed unable to move and where Thea sits up with her worrying that she’s going to die. And then of course we reach much later in the book where this has become, there’s no improvement. She’s hit the very, very severe. And I really wanted to make that clear.

that even within the same person, this illness can change vastly. I also really wanted some historical context for how these patients... And not being helped and the way this happened. And I think we went through, you know, the 1970s, well, 1950s rural free hospital outbreak. We went to the psychiatrists who decided it was psychosomatic.

We went to the renaming from ME to chronic fatigue syndrome. We missed out the pace trial because... couldn’t fit that in and make the book next time next time yeah um but i really wanted to put some historical context in it as well so yeah the severity the label

nature of it and definitely why the patients weren’t getting the help that they needed those were kind of the three key things that i wanted to include yeah that’s

Rupert

great and um again we touched on this a little when we were speaking a little earlier but there’s there is a sort of cliff edge in acceptability and relatability as you approach the severe, very severe end of the scale. And the mother character is on the very severe end here.

And she knows the life threateningly so very severe end. But how have you You know, related to that, how have you seen and experienced that sort of that gap, as it were, between the people who are getting by that struggling and then the people who are incapacitated and isolated from others through ME?

Laura

I think there’s a really horrible catch-22 in getting people to understand this illness because those of us, and I count myself now moving towards the mild end of the illness in recent years, those of us who can go out, it’s assumed that therefore the illness can’t be that severe because you will see us out. Like I said,

I was in my little local bookshop five minutes away today, had a nice conversation with my doctor. I looked fine. When I was more severe than that and housebound, nobody saw me. So you can’t really ever impress upon them. This is very, very severe. And then, of course, there were, as you said,

a very severe end where people almost just simply don’t believe that you could be that ill and nobody be trying to help you. And so you’re disbelieved at each stage for very different reasons. One is that you don’t look sick when you’re out, if you’re in the milder versions.

The other is you’re not out at all in the kind of moderate version. And the other is, well, if you were really that sick, somebody would be trying to help you in the very severe version. And I think that’s a big problem with post-viral illness in general is it’s so easily disbelieved. And like you say,

people do struggle to relate to any of the stages because at a certain point they’ve run out of things to say. When you’re very severe, you lose the ability to speak with them when you’re very, very severe as well. And then in the normal stages, I’m guilty of this as well.

When I go out now and I generally speaking, I manage... two walks a week now, just to my local shop and back. And once or twice a month, I can go and see a friend in the city. That’s about where I operate.

um but I don’t want to talk about being sick when I’m out of the house I’m so unwell all the time you know I when I’m out of the house I’m making the effort to to enjoy myself um and so I think that possibly does mask some of the illness as

well in that I just don’t want to talk about if I’m outside um and that changes of course if I’m at an event where I’m talking about it specifically or you know I’ve spoken at a couple of demonstrations but generally if i’m just seeing a friend i don’t want to talk about

the last month where i haven’t been out of the house it’s rubbish it’s like i’ve got 20 minutes to feel human yeah exactly let me let me enjoy the feeling human bit because also i don’t want to think about the crash i know i’m going to crash Let me enjoy the bit before the crash.

And I think that does also do a disservice to the illness itself because you can look so well. I mean, look, I’ve got makeup on. I’m hiding all manner of sins. And it’s fascinating that you can just, at this stage that I’m at, make it invisible to people.

Rupert

Yeah, yeah, yeah, absolutely. And again, you know, the power of... in contrast with both physical visible conditions, you know, when people have, you know, crutch or wheelchair or, you know, those sorts of things that we’re familiar with. Or on the other hand, if we have,

if people have a diagnosis which they can link to something with which they’ve grown up that is intimately connected to our culture and society, forms of cancer and other, you know, recognised conditions. The whole mental architecture of how people relate to you is different, isn’t it?

Laura

it is i also yeah like you said there isn’t a mental architecture in relation to post-viral illness i think when people think of it they either do think of mental illness or they have visions of you know swooning victorian heroines on the fainting couch and you will actually Occasionally it does look a little bit like that.

But I think those women, they still have that hysterical label attached to them. You know, it’s the delicate little flower who can’t cope with the world. Yeah, exactly. It’s the hand on the head. And that is how it’s considered. We haven’t had a real cultural moment, like you say,

where we have with cancer or with even with MS, which, again, has its own struggles, I think, especially for people who aren’t women because MS is female predominant. um so there’s a bit of a delay in diagnosis oddly for people who aren’t um but for

most illnesses there is like you say mental architecture there people know how to relate to them less so with post-viral illness for sure how how would you say that

Rupert

those things deeply shape um your shape your protagonist in your book because I think she’s fascinating and that she’s not doesn’t go out of her way to be lovable as a central character it’s quite hard to relate to on some levels and you know you actively pull her back from

sympathy at times and how has she been crafted by those experiences in in the way that you’ve written the book i think yes you’re

Laura

right fear is not an entirely uh sympathetic protagonist um i think when i was writing her i pulled probably one of my worst traits from myself and gave it to her and that was during a crisis you put the blinkers on You can’t fall apart. There’s no point. It’s the middle of a crisis. Deal with your life.

And you don’t think about anything. You don’t feel anything. You barrel forward. And I’ve done this my entire life. Practicality before feeling until the crisis is over. And then you can collapse. That’s fine. That is a very, very negative. Well, it’s been very useful occasionally, but it’s a very negative feature of my own personality.

Rupert

I might recognise that trait.

Laura

Yeah, exactly. I think we all recognise it to greater or lesser extent. And I gave it to Thea because I thought a daughter of a single mother who is a young carer from a very young age would have to be practical above all else, because otherwise she’d have been taken into care.

She’d have been removed from the environment. So I see Thea as somebody who has had to be very practical and a parent to her parent from a very young age, but he’s also quite exceptional in the way that she thinks and in her intellect.

And so she has decided that if nobody else is going to do anything, she’s going to do something. And until she has fixed it, she can’t, be human to herself she has one purpose and that is to save her mother which is her only aim really and that it’s just accidental that it would branch out into all

these other people I mean she might not say that not that I can have a conversation with her but she would think oh you know it’s very altruistic it’s not she wants to save her mother because that’s what she’s been taught she needs to do in order for both of them to move on and And because she,

well, question mark, whether she did for a time or not, but because she hasn’t managed that, she’s... got a sort of arrested development in other areas of her life. She is not very in tune with her emotions, although she does care. And they will sneak up on her and blindside her at times when she isn’t expecting them.

And then she resents herself for that and resents the person who’s brought the emotion out of her, which I think is also a feature of it that you see quite clearly in the book. And it makes her simultaneously sympathetic and not sympathetic at the same time, because you never get the moment where Thea shows herself as...

wholly human in that sense I think she she’s so tightly controlled um for the most part uh but I think she’s had to be yeah yeah and I think that’s a feature of the

Rupert

book is the flipping of the script with many or most of your main characters seeing the other sides have come out in and again in so many ways due to the kind of logics and inexorable practice of medicine itself. Yeah, exactly. So, okay, so I’m going to indulge myself as the philosopher here. So, Awakened, I think,

is full of philosophical questions about the nature of mind, memory, identity, and ethics. And it’s bold in just the scale and the span in which it tries to address those issues. What drew you to explore those at that quite both profound and broad level rather than just with respect to the particular problem.

And has your understanding of those in turn been shaped by chronic illness?

Laura

Yes is the answer that I think and that probably is the answer to the bigger question. I included them because I don’t think you can lose control of your body and not begin to think about disconnect between your mind which remains the same and

the vessel you’re living in, which no longer functions the way that your mind would want it to. And so when I was writing it, I think some of it was quite cathartic to write in the sense of I do believe that I’m still myself, even if I’m lying flat on my back, unable to...

to express that I am still myself. In terms of the sort of wider issues, I needed Vladimir to challenge some of the moral questions, which Thea has not been looking at. But I also needed him to have a slightly God’s eye view over... over the problem itself which isn’t just her actions but is the action of society

is the action of humanity is the action of minds that are not evolving at the same level as the technology that they’re creating um and so that of course brings in all kinds of questions of mind and ethics and technology and and where we relate in all of these things um

And it was really interesting to think about. I did scare myself a little bit in terms of how quickly I do think technology is outstripping our ability to cope with it. Again, a slightly subtle thread through that book, but I see it a little in AI now.

I’m watching AI happen and I’m thinking, I’m not sure we can cope with this as humans. I’m not sure our minds can quite keep up to it. So yeah, if we could stop that, that’d be great.

Rupert

So you mentioned Vladimir and I’m going to just press a little more. So, I mean, he’s magnificently creepy and ludicrously intelligent and terrifyingly violent. And at the same time, he kind of stands in towering moral judgment over everybody else. How did you conceive of this? What do you think of him?

Laura

I love him. He’s arguably one of my favourite characters. I don’t mean that he’s not creepy or not violent. I just think he’s very interesting to write. I knew that... two survivors were going to show up at the door and I knew that one of them was

going to be interviewed by Thea and that he was going to be a stand-in for monster, human, all those questions. And initially I conceived of it as a little bit like Clarice Starling going to visit Hannibal, but where the power balance was shifted because technically Thea should hold the power because she’s...

on the outside and he’s locked in but what i enjoyed was the idea that actually he holds the power and she’s unaware that he holds the power um so i enjoyed playing them off against each other like that i don’t know how many people have picked up

on my very very subtle personal thread through vladimir so when he asks thea’s name He goes through a list of the Theas that he knows. And one of the names he comes up with is Pasithea. Pasithea is one of the charities in Greek myth. And she was in mythology married to Hypnos, the Greek god of sleep.

Rupert

Okay.

Laura

And then, of course, Thea and Vladimir start a relationship of sorts, if we can call it that. There are lots of little hints throughout the book, including the poppies in the trees and the being by the river in the dream and the opium. that it’s entirely possible that Vladimir is in fact the god of sleep.

And he’s wandered in here because they’ve really pissed him off. They’ve taken sleep from humanity. So what I enjoyed was that Vladimir is simultaneously a monster and he works on that level. He’s also on a slightly deeper level, possibly the god of sleep.

And so he does get to stand in towering violent moral judgment from his position as god. And I just enjoyed the idea of writing a character that was also maybe a god and also maybe wasn’t and really does know his stuff. And I don’t know if Thea ever realises quite what he is,

but he might not be that simultaneously. I just liked the idea.

Rupert

Well, you don’t tell us, to be fair.

Laura

He’s never confirmed. He gets a few hints. He gets the sort of God questions and he gets the moral standing and he gets to dream with all the sleepless and he gets to smoke a load of opium and be generally creepy and, you know.

esoteric about what he’s talking about so I like the idea that you can read him as a god if you choose to read him as a god you don’t have to read him as a god I don’t think it would have been as fun to confirm it entirely I think it’s a nice if

you picked up on it it’s fun to think about and if you didn’t pick up on it you can read him as as the sleepless monster it’s fine

Rupert

Excellent. So I’ve got a couple more little sort of rounding off questions. But I’d also invite anyone who’s watching out there. And there are quite a few and a couple of people. Paula, thank you, who says that she enjoyed the book. And A Millionaire has waved as well.

um so um but so do feel free to tap in any questions you might like to share but a lesson until something comes in so first you know now you’ve had a bit of time to reflect on the book and its reception is there anything you’re thinking oh i would

Laura

love to have tweaked this interesting i i don’t know if i tweak it now that it’s It’s done. I was aware I was writing a Marmite ending. So I knew that there was going to be a split on people who really liked the ending and people who hated it and had no idea what I was doing.

But I really liked the ending. And unfortunately, I’m the one who gets the final say. So because of that, no, I know that if I was making a slightly more commercially viable book, I should probably change the ending. But I like it, so I’m not going to.

Rupert

Fair enough. Fair enough. But that does beg the question, what’s next? Is there another one brewing?

Laura

There is another one brewing. The next one is more of a folk horror and it is more about, there is an element of disability in the form of mental illness in the next one. But it is primarily about the horror and the joy and the terror of being a teenage

girl that’s set over a long weekend where everything goes a little bit Lord of the Flies at a teenage party. And there may be a little something in the woods. So that’s the next book.

Rupert

So that’s more that’s interesting because there’s a line I don’t remember. I should have. highlighted it put a little tab in but you’re really clear you know you’ve been put so broadly in the horror genre but you said you know and I think you had Vladimir

say it was it that horror isn’t a jump scare you know and I can’t quite remember you had a quite nice darkly chilling line that followed about that you’ll remember about what horror is but go on remind me.

Laura

Horror is a revelation arrived at far too late that’s the

Rupert

Yeah, yeah, yeah, absolutely. Sort of caught in one’s own dramatic irony or the wrong side of a dramatic irony, as it were. Yeah, absolutely. And so. And yeah, it’s an unusual that this is a psychological horror, isn’t it? But it’s one that more reflects. Again, it’s not about something horrible happening in a moment.

It’s about the drift of something awful happening over long periods of time and the long impact of life.

Laura

Yeah, I think actually now you’ve put it that way, the second book is similarly. The reason it’s folk horror is because it’s focused on the kind of the land maybe remembering what the people don’t. So, yes, that seems to be a recurrent theme, the long game for horror as opposed to the sudden shock. Yeah.

But it is very condensed, this next one. It’s condensed over a weekend where it all comes to light, which is proving startlingly difficult to write just because you’ve got to keep the tension going. So we’ll see how it goes.

Rupert

that’s that’s exciting i look forward to it um i’m just gonna we’re gonna wrap up i think soon uh we haven’t got any questions out there yet from the audience probably people too busy listening but i wonder if you’ve got anything to say to um people

out there who might be listening live or who many more who will probably download this and watch it as a later stage um about you know your relationship to you know um your experience of of writing and of chronic illness and your sort of the passage, intertwining passage of those two things.

Who have you, what would you say about who you’ve become through this and where you’ve come to?

Laura

I think when I first got sick, and this would have been 2015, 2016, so a long time ago now, I would have been horrified if somebody had told me that nigh on 10 years from now, I would still be sick. I would have told them there is no way. There is absolutely no way.

I can cope with it. I’m not doing this. That’s not a thing. I think a lot of people who are ill go through this stage, particularly in the first three years, where they think... If I’m not better, nothing is possible. Nothing matters. And then around the three-year mark,

which seems to be the case for a lot of us, you realise that you have started to adjust. And it might have been terrible to do. And the stage we adjust to is obviously different for everyone. But the amount of resilience that people with chronic illness, and particularly with post-viral illnesses, have...

is more than they know they have. I think I’m more resilient than I knew I was. And I see this in severe patients. I see it in very severe patients. I see it in people across the spectrum where, like Claire as well, who runs this book club and this advocacy,

to be able to do that from your bed, from your house, we will all find something that we can do. And that is a testament to the strength of people who have this illness. And I think whenever people are worried that they’re not achieving in line with what they thought they would or that they’ve lost this,

that they should remember that sometimes just getting through the day is the strongest thing they could do. And I am endlessly in awe of the people in this patient group. And I think there is a lot There is a lot that we are worth together and a lot that we managed to do.

And for me, it was writing a book over seven years. And for others, it will be art. For others, it will be advocacy. There will be something. And even if there’s not, sometimes just surviving is enough. And again, we’re going back to the anti-capitalist thing. It’s... Your worth isn’t isn’t dictated by productivity. It can’t be.

And that’s as soon as you start to realize that I think you come to some form of acceptance. So I would urge everyone not to beat themselves up. Basically, that’s what I would say. Do not beat yourselves up. You are doing brilliantly. The fact that you’re here. That’s brilliant.

Rupert

Oh, I don’t think I can top that as a final message. Thank you for being a wonderful guest and for giving us a few insights and a couple of little mini scoops, I’d say, as to your fantastic book. And I hope we get to talk to you when you publish your second. That would be lovely.

So thanks so much for coming.

Laura

Thank you for having me. Bye now.