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How We Construct Our Worlds: Disability & Fiction with Kathryn Lund

kathryn lund the things we left sleeping coverWelcome back to Neurodiverging! Today I’m here with Kathryn Lund, an English novelist who uses writing to explore her neurodivergent life. Kathryn has a non discreet functional neurological disorder which presents with aspects of non epileptic seizures, chronic pain and problems with OCD, anxiety, depression and other mental health issues.

She has previous diagnoses and presentations of epilepsy and non verbal Tourettes.

Kathryn’s great fascination is the way we construct our worlds, from our stories to our physical spaces. Her undergraduate degree in Archaeology and her post graduate qualifications in Medieval Archaeology, Education and Creative Writing are part of this passion.

Kathryn’s novel, The Things We Left Sleeping, is out now. Buy it on Amazon, Bookshop, or at any other major US retailer.

Want to listen? This post is based off of Episode 52 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify | Youtube

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Show Notes:

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Transcript of How We Construct Our Worlds: Disability and Fiction with Kathryn Lund

(Transcribed by the amazing Justice Ross, thank you!)

SULLIVAN: Welcome, Kathryn, to the Neurodiverging podcast, thank you so much for being here with us today. How are you?

LUND: I’m really excited! Thank you for having me and for inviting me into your podcast and, by that, into lots of people’s homes, which is a very exciting thought.

SULLIVAN: I’m really excited to have you. Because I’m an autistic person, we end up talking a lot about autism and ADHD over the podcast, but obviously, Neurodiverging is meant to encompass many, many neurodivergent types and individuals. So I’m honestly really excited to have somebody who can kind of help us understand different aspects of neurodivergent experience, so thanks so much for reaching out.

LUND: No that’s ok. And that’s what’s really exciting to me, because it’s something that I’ve had for, like, 14 years now, and I’m still trying to understand it. So if I’m struggling to understand it, obviously, it’s difficult, then, for other people who haven’t really heard of it before or don’t really know anything about it to understand it. So that’s part of what I want to do, is go tell people that this exists, lots of people have it, it’s actually quite a common neurological condition, it’s just it’s quite a complex one and it’s a non-discrete one, and there’s lots of variation. So, just really giving people that idea that it is out there and this is what it looks like, this is how it presents. This is what someone who has it looks like and does.

SULLIVAN: Thank you, yeah. And that’s really part of my big goal, too, I’m sure you know, [which] is just giving us the opportunity to talk about ourselves and be better understood in the world, so I’m just really excited.

So I guess let’s back up a little bit: Would you mind starting off just telling us a little bit about you and how you would describe your disabilities that or neur… (Stutters) neurodivergences. I can’t English today. (Sullivan and Lund laugh)

LUND: So, I’m Kathryn Lund, I’m 37. As you can tell from my accent I’m English; I’m from the north of England. And I’ve been very lucky today, lots of really exciting things with my life. I’ve been to university, I’ve been to graduate school, I’ve worked in museums of heritage, I’ve done a little bit of teaching, I work in an arts and framing shop. And, this last year, I have become, on the back of an M.A. that I’ve got, an author. And also, over about the last 14, 15 years, I’ve had problems with neurological difference, quite a strange and varied history of seizures, mental health problems, and that’s what FND is.

It’s not a discrete condition, it’s not something like autism, it’s not something where… even though there’s a spectrum within those things, they are a condition and you’re going to present somewhere within that spectrum, and you fall into almost categories of being. With FND, it’s that you have lots of different presentations, and they can come from lots of different conditions. So you don’t have enough of one thing to be put into a certain bracket. So, as you might be able to tell from the way I’m speaking, I quite often say the wrong word and lose my train of thought, so politics for that is a really inconvenient thing when you’re trying to explain something. (Laughs)

SULLIVAN: It’s alright! Common on this podcast, so you’re not alone in that.

LUND: But I get a lot of… I’ve had epileptic seizures and non-epileptic seizures, which are, rather than having full convulsions, you have mind absences, you lose control of your limb, you drop things, through things. So I smash a lot of cups, I drop a lot of phones, my phone at the moment, that I’m speaking into, is in one of those army cases. So I went to the phone shop and I was like, “I need the sturdiest phone case that you have,” so I’ve got a very attractive sort of army-style phone case on my phone. And so, memory problems, OCD, and, assorted with that, as well, just quite a lot of mental health problems. So I’ve got a history of depression, quite mild OCD, high anxiety, disassociation, tiredness, lack of… I call it temporal spatial awareness, so someone can tell me that it’s Wednesday, and I know what Wednesday is, but it doesn’t really make a connection in my brain.

The best way I’ve had it described to me is that your computer’s got all the tabs open, and your computer tower, your hard drive, is all there, but the connections in between the windows and in between the actual hardware of your computer, it’s just not always firing right. So I’ve got FND. You could have somebody else come on the program with FND and they could tell you, you know, a completely different range of symptoms, and might only have a few-ish overlap and are the same as mine, which is one of the things that makes it so difficult to deal with and to get accommodations for, because you say, “I’ve got FND,” and they’re like, “Great, what have you got?” And you end up giving a list.

SULLIVAN: Yeah.

LUND: And it’s one of those things where it’s been very bad in my life—it’s been so bad in my life that I’ve had to live at home, I’ve had to rely on family, I’ve been signed off work sick for 4 years—right through to: I’ve been back to university, I have a job now, I work 4 days a week, I live independently, I’ve got my own house. So it’s one of those things that, as well as having lots of different presentations and lots of different symptoms, how bad you are with it can really go up and down through your life. And it can start at any time, so you can be born with it or, like me, can be sort of totally unaware until you’re 18, 19, and then suddenly it starts and presents later on.

SULLIVAN: Yeah. What was it like— Because if I remember correctly, you’ve been dyslexic your whole life. Right?

LUND: I have been dyslexic my whole life! Especially numerically dyslexic.

SULLIVAN: Yeah. So you had one disability, and then were kind of hit with this whole host of additional ones later on in your late teens.

LUND: Yeah.

SULLIVAN: What was that like?

LUND: The thing is, I think when you’re a child, and when you’re a teenager, you don’t realize you’re different. You don’t know that your brain works differently from other people’s, you don’t realize that other people don’t go around reciting little patterns in their heads and touching things over and over. So I knew I was dyslexic. My mum, who passed away about 14 to 15 years ago now, when I was little, she was a special educational needs coordinator at a primary school, which I think is the equivalent of your elementary schools. So I never had a statement. She’s like, “You’re fine, you don’t need one yet, you don’t need one yet, you’ll get to a point where what you can do and what you can’t do will tip and you’ll need your statement.”

SULLIVAN: Yeah.

LUND: And I had a lot of OCD. But I didn’t realize that the OCD was a problem; I just thought that was how my brain was.

SULLIVAN: Yeah.

LUND: And it was only… So in my 3rd year of university I started having just really intense, sudden-onset head pains, migraines, which I put down to stress, I was like, “Oh, you’re very, very stressed, you’ve got your…” (Pauses to think, clicks tongue) See? The word! Those things that you hand in in your third year at university that take a lot of writing.

SULLIVAN: Essays? Thesis?

LUND: Yeah, thesis! (Sullivan laughs) You have your thesis. (Lund laughs) You have your thesis to hand in. I get halfway through a sentence [and] just start doing that, yeah, can’t get the word out, I can’t do the word. But again, you sort of write it off. I could sort of cope with those things because they weren’t overwhelming. It’s a bit annoying to lose your train of thought, but it’s not overwhelming.

It was only when I was about 23, 24, and I was having this really strange week where I was watching things on the television which I knew that I knew—I’d watched them before, like, programs which I had bingewatched over and over again—and I’m like, “I can’t remember watching this program. I can’t remember, I don’t know what these…” And then suddenly, it would snap back in. And it would feel like I’m at one time zone inside my head and another time zone on the outside, and I’m like, “Oh my, I must be really, really tired this week.”

SULLIVAN: Mm-hm.

LUND: And then I just had a week of having constant seizures, and I was in hospital, just, constant seizures throughout the week. And then, I think that’s when my life really, really changed, because from that time on, I have never not had a day when I don’t have something present. So that pain, or disassociation, or strange sensations in my head. And for the first 4 years, just really being quite incapable. So, had to move back home with my dad, would spend most of my time asleep, couldn’t work, couldn’t think, couldn’t cook, couldn’t hold things. Just crying all the time, not being able to think, really, really bad nightmares.

And it felt like an invasion. It felt almost like a grief; I’d lost this person that I was. Because the person before, she’d just finished uni, she was in her very early 20s, and uni had been great, I did archeology, which is a great course to do, it was really good fun. I picked it because I liked the university prospectus, and archaeology was near the start of the prospectus, and I’m like, I’m gonna do archaeology, that sounds great, that sounds really good fun. I had done really well, and I had worked my department and graduated near the top of my year, and I was really ambitious, and I was gonna go and do all of this stuff. And then suddenly, I wasn’t. I couldn’t even get up.

SULLIVAN: Yeah.

LUND: So it felt very much like a death in a way. It felt like I’d really lost the person I was. And that really affected how I dealt with it, I think for a good 7, 8 years, because I was trying to fix myself; I refused to believe that I wasn’t gonna get back to be what I still was as myself. I was like, “No, I was this person, this is happening, I’m gonna get over this, and I am gonna go back, and I’m gonna fix this, and I’m gonna be back to being that person.” And that was a really, really difficult thing to stop thinking and to get my head around, and to be like, “No, this is actually… this is how it’s gonna be. And rather than trying to fix it, I’ve got to learn to accommodate it. I’ve got to learn to function with it. I’ve got to learn to stop berating myself almost.”

SULLIVAN: Yeah.

LUND: And, “That person’s gone, so you can lose another 10 years, or you can start dealing with the fact that this is what you’ve got and sort of move on from that.” But very much like a grief, and very much like an invasion, and very much like I’d been knocked sideways from the life I absolutely was convinced I was gonna have.

SULLIVAN: Yeah.

LUND: Onto one that I absolutely never thought that I would have and, to be honest with you, wouldn’t choose. I wouldn’t choose to have this as a condition. I know for lots of people it feels like a part of them, but I think, for me, because it comes with a lot of pain and a lot of difficulties and a lot of restrictions, I would absolutely get rid of it. And that can be a difficult thing to reconcile with, because it feels like you’re saying “I’m not happy with myself.”

SULLIVAN: Mm-hm.

LUND: You know, “I want to get rid of a part of myself.” And I don’t! I want to get rid of the discomfort that I’ve got with part of myself.

SULLIVAN: Yeah!

LUND: It was very difficult just getting my head around that for 7 or 8 years or so. And part of that is the timing of it. It was my early 20s, and everyone else is getting married, and buying houses, and going on hen parties, bachelor parties, and I sort of, I turn up and go “I’m going to bed.” And it just felt [like] all these things were happening, and it was just slipping by in this timeless merge that I have no connection to. So I felt quite a lot cheated, actually.

SULLIVAN: Yeah.

LUND: Quite a lot cheated that the timing of when this happened… It felt like a very unfair [timing]. I would have liked a few more years of being 20. (Laughs) I think.

SULLIVAN: Yeah.

LUND: But everybody is! Everybody wants a few more years of being 21, I think.

SULLIVAN: Yeah.

LUND: It’s a good age.

SULLIVAN: It sounds like you were really lucky at university. My early 20s were kind of a hot mess, but there were definitely periods of my life where I would like them back very much, so I think I can understand that feeling a lot.

LUND: Yeah.

SULLIVAN: You said that there was this kind of huge period of grief and feeling like an alien has invaded and all this, and then that you sort of swung around to feeling like you had to integrate this new part of your life into yourself to make it work so you could move forward.

LUND: Yeah.

SULLIVAN: What was that integration like? What were some of the things you did or thought through to try to move forward from that huge knockdown in your mid 20s?

LUND: Well, a lot of it was just that mental realization. I remember, I was speaking to a counselor, so I’ve seen a lot of different people to help me with this. I’ve had counselors, and psychologists, and I’ve got a neuropsychologist at the moment, I’ve had neurologists. I’ve had the whole variety of people. But one of the more useful things that one of them said to me is, “Why are you digging downwards?” That’s what I was doing, I was digging downwards. And I [was] like, no, I’m not gonna slip backwards, I’m gonna be this. And he [was] like, if you’re not going anywhere, you are just putting yourself in a hole. And I think I just needed somebody to point that out to me.

So it was changing that way of thinking. It was also… I think. because the condition’s not discrete, and because I have seen this whole range of people, the approach of the medical professional side of it has felt very alienated. It’s like, I can see one person for this, and one person for this, and one person for this, but none of it’s coordinated.

SULLIVAN: Yeah.

LUND: And for a lot of the time, it felt like I was responsible for being ill because I wasn’t seeing the right people. And I wasn’t seeing the right people because I wasn’t asking for the right help, and I wasn’t asking for the right help because I don’t know what I need. And it was this big, circular… almost think of self-blame.

And [I was] really struggling because my neurologist would say “You need to see a sleep specialist, but I can’t refer you,” and my general practitioner would say, “Well I can’t send you to see a sleep specialist because you’ve got to have these leaflets first about not drinking caffeine, and when you’ve done that, I can get you some sleeping tablets.” So there was times when I… Luckily, my dad— Because my mum died of cancer, my dad joined the local hospital board and was a patient liaison, so he was like, “No, you absolutely can see a speech specialist, you just need to fill in this form, and this form, and this form.” So I got to see people, but only because I made a fuss about it.

SULLIVAN: Mm-hm.

LUND: And I think part of the reason I was able to move forward a little bit was by feeling that actually, it’s not my responsibility to make myself well.

SULLIVAN: Mm-hm.

LUND: I have a perfect right to expect for the people to shoulder a little bit of that for me. So if something’s not working, it’s not because I haven’t done something, it’s either because it’s not working—it’s not the right program for me, it’s not the right medication for me, it’s not the right medication combo for me… it’s something that’s not working, it’s not something else that’s not working because me.

SULLIVAN: Yeah.

LUND: And that’s the really easy thing to think sometimes, because I’m not working. My meds aren’t working, so that’s my fault, I’m not having the right reaction to these meds, they told me they would work, they’re not working. Why aren’t they working for me? And I think part of it has been getting out of this mindset [and into a mindset of “Ok, this isn’t working. Fine, I’ve tried it, I’ll try something else.” And not be afraid to say “I want to try something else, I’ve had this.” You know, seeing a counselor who’s really helped at times, but I’ve got to the end of my 13 allotted weeks—well, I want another 13 weeks, actually. It’s being brave enough to say that I want that and I need that. And you’re not being fussy, and you’re not being pushy, you’re not taking… If your leg hadn’t fixed, you’d say, “Put the cast back on,” so why can’t I say the equivalent?

SULLIVAN: Yeah.

LUND: So part of it, I think, was that little changing in attitude and changing mindset, that you’re not a problem, and that those people are actually… you know, someone’s a neurologist because they’re interested in neurology, they actually want you to turn up and tell them what’s wrong. You don’t need to think, “I’m not gonna do that because I’ve already seen 4 neurologists and they’ve not helped.” Just go and see another one, and get them to help you.

SULLIVAN: Mm-hm.

LUND: But I think, sometimes, you can’t change the way that you think until you’ve sort of lived through it a bit, because you can’t tell yourself to think differently. You’ve got to come to that realization of just, “No, this way of thinking is not working for me.”

SULLIVAN: Mm-hm.

LUND: “But, yeah, let’s just change it, and let’s… ” You’ve kind of got to come to that yourself, I think. You can’t be told.

SULLIVAN: Yeah.

LUND: And if some told you, you would find it really aggravating. (Laughs)

SULLIVAN: Yes. (Laughs)

LUND: You would find it really a very aggravating thing for them to say,

SULLIVAN: Mm-hm. Because it can feel reductionist, I think, sometimes, for people to come in from outside and say, “Well, you’re just not thinking about it the right way!” or, you know, “Positive thinking!”

LUND: Yeah.

SULLIVAN: And it’s like, no, I can’t positive think myself out of this.

LUND: No. (Laughs)

SULLIVAN: But to some degree you’re also completely right that, if you’re digging the whole straight down, you’re never gonna be able to dig it back up, right?

LUND: Yeah. Exactly. And it’s not even a question of thinking positively, because at the same time, it’s like, “Stop digging a hole downwards,” it doesn’t mean that you’re gonna cure yourself. It means that you’re accepting that you’re not gonna cure yourself. Because all you’re doing when you’re digging down is going downwards.

SULLIVAN: Yeah! Yeah.

LUND: And even if you start staying where you are and going forwards, you’re not coming back up, well, you’ve still changed direction.

SULLIVAN: Yeah.

LUND: You’ve still made that decision that you’re gonna try something different.

SULLIVAN: Yeah, that’s really interesting. Thank you for sharing all of that.

Part of what you’ve had to learn to do, then, and especially since your condition comprises so many symptoms and is different from everybody else with your condition, is you’ve had to learn how to ask for accommodations that people can actually understand, and hear, and enable for you.

LUND: Yeah! Definitely, because I mean, I’ve tried going back to university twice to do a grad program. And the first time, which was probably about 4 or 5 years after I had those seizures, it was absolutely disastrous. I think I lasted about 8 months. I just could not cope at all. And part of that was because I was still trying to prove that I could turn up and do this. I don’t need help, I could turn up and do this because I’ve done it before, I know that I’m good at academia, I like academia, this is where I’m comfortable. So I returned to my undergrad university because I felt very safe there, very confident there, and I thought, “I don’t need to ask for anything.”

But actually, it was only when I got there that I realized I can’t cope in seminar rooms because there’s one spectrum of light in the bulb and there’s another spectrum of light on the interactive whitescreen, and I can’t control the temperature, and I can’t control the noise. And I can’t control the commute—so, I’m really bad at getting on busses. I’ll be on them, then I’ll be thinking, “I don’t recognize where I am, I don’t know where I meant to get off,” it’s a complete dissociation. And it was all these things that I discovered I couldn’t do when I got there, because I hadn’t allowed myself to think “what are the things that I might struggle with?” And it got to the point where I just rang my dad one night at about midnight, just in absolute floors of tears, I’m like, “I can’t do this, come and get me, come and get me right now.” Because I’ve got to the point where I won’t leave my flat. I just cannot cope with the idea of opening my door and leaving my flat. So it was actually quite detrimental; it took me backwards. And then, a few years ago, I’m like, “No, I’m gonna do this again, and I’m gonna do something different. I’m gonna go to a completely different place, I’m gonna do a different course, and I’m gonna do it because I want to do the course and because it’s interesting. But I’m also gonna do it by not being afraid and also not really being embarrassed to say what I want.”

SULLIVAN: Yeah.

LUND: Because some of the things can seem quite strange. So I think creative writing— I did creative writing at Oxford Brookes, which is a very small campus university just on the outskirts of York; it does a lot of art and English and literature courses. So it was a really good choice; it was a small university. And we were in this beautiful Victorian building that was just off campus, and it had a veranda around it, so for some lectures, I would literally open the windows and I would sit on the veranda rather than sitting in the lecture room.

SULLIVAN: Yeah.

LUND: So I could still hear, and I could still interact, I just wasn’t in that room that I couldn’t do. And I don’t think that I would have had the confidence to do that the first time I tried. So it’s about having that confidence to say, “I don’t care if you think this is really, really strange. I’m actually gonna sit outside.”

SULLIVAN: Yeah.

LUND: On bad days, I can have visual ticks and spasms, that sort of things, and I’ll just want to leave the room and go somewhere where I can control the environment, and breathe, and come back. And it’s being brave enough and confident to say, “If I’m doing that, don’t ask me if I’m alright.” Because people want to ask if you’re ok, and if they can do something, and it’s like no, I’m not ok, but I’m managing how I’m not ok. And I just want to be able to exit the room and enter the room when I want to.

SULLIVAN: Mm-hm.

LUND: It’s just about giving yourself those allowances. There’s gonna be things you can’t cope with, and that’s ok. So, I gave myself 2 years, because I’m bad at timetable and scheduling and I can write off a week sometimes with migraine, so if you’re giving yourself the time pressure, that’s not gonna help. All these things that I’ve learned from just doing it so wrong the first time. But my university was also really great as well.

SULLIVAN: Good.

LUND: I went to their student services, to the disability services, I got, “These are the problems.” So I went to the tech day in Freshers Week, and they got me a laptop, and they downloaded all this really super, super tech onto it that I just could never have afforded if I did it on my own. And it was so good that I’ve only just stopped using that laptop. It’s had no G key for about 2 years, so I’ve written a whole novel without a G key, you really have to press it up and down. But, like, screen reader, screen size, dict font, recording programs, just anything that cuts down my screentime that helps me read online.

And I’ve stopped being conscious about having to use it. I think that’s an important thing; I’ve stopped being conscious about having to use things like that.

And sometimes, you ask for things and it’s not useful, and that’s alright as well. If you’ve asked for something and you’ve tried it and it’s not useful, you haven’t wasted people’s time.

SULLIVAN: No.

LUND: You’ve tried it and it’s not useful.

SULLIVAN: Mm-hm.

LUND: But yeah. Some of the stuff I’ve had to do is quite strange. Like, it’s a city university so there’s very limited parking space, but I need a parking space, so I got a disability parking permit. I put a blanket and a pillow in my car, and if I wasn’t coping, I would actually go and lock myself in the car where the windows were tinted, and I could control the temperature, and I could make it quiet, I could make it dark.

SULLIVAN: Yeah.

LUND: You know, I’d lock myself in the car for 4 hours, and then I’d go back to university.

SULLIVAN: Mm-hm!

LUND: So, yeah. I think it’s because I [had] more knowledge of what it was that I needed, which is quite a lot of control, actually. I need quite a lot of control of where I am.

SULLIVAN: Yeah.

LUND: And natural lighting. I can only cope with natural lighting, so natural lighting only, obviously.

SULLIVAN: Yeah.

LUND: Big windows is what I need.

SULLIVAN: Yeah. I’m sure a small university helped with that. Or, I hope it did. Because I went to a large school for undergraduate, and it was artificial lighting the whole way, because we were, you know, 12-floor buildings and things.

LUND: Yeah.

SULLIVAN: In retrospect, it was not good for me, but at that time I didn’t know I was autistic, so I had no background to say, “This is why this is bothering me.”

LUND: Yeah.

SULLIVAN: So it sounds like not only you’ve figured out what accommodations to ask for and what to advocate for, but also, you’ve set boundaries around how people should interact with you when you need some breaks. And you’ve also been able to look at the expectations you had for what “normal people” do and just throw some of those out the window, and say “well, these are not expectations for me, these are for people without this condition.”

LUND: Yeah. And I think that’s something that everyone should do for themselves anyway, whether they’ve got a disability, got something that affects them, or not. Your boundaries are your boundaries, and you should only be trying to do something for the right reasons. That first time, I had completely the wrong reasons; I was trying to prove something. And if you’re trying to prove something like that, you’re gonna fail anyway. Something is gonna fail you, because you’re gonna fall short of that standard of trying to live up to what you think you should be. That’s a really difficult thing to do.

But just going a bit more with the flow, and just going with a bit more of “I’m doing this because it’s something that I’m good at, I’m doing this because I enjoy it,” and just setting better mental expectations. Because you don’t want the fact that you’ve got out of bed to be an achievement, but actually, sometimes the fact that you’ve got out of bed is an achievement.

SULLIVAN: Sometimes it is.

LUND: And it’s just [that] I think you should let yourself have it.

SULLIVAN: Yeah.

LUND: So, lots of people say it, just being that little bit kinder to yourself. Something that other people might find a really simple thing to do, like get the bus to campus, for you isn’t, so you’re gonna walk for an hour and a half because you’re not gonna get that bus.

SULLIVAN: Mm-hm.

LUND: So you’re putting more into that commute before you’ve even got there.

SULLIVAN: Yeah.

LUND: But saying, “Well, ok, but I can actually walk.” And there’s people that can’t do that, there’s people that wouldn’t be able to have that option, and I’ve got that option. So turning it around a little bit and looking at, “Well, look at that, I’ve got a way of doing that. That’s something that I can do.”

SULLIVAN: Yeah. Yeah. That’s really helpful, thank you. (Lund and Sullivan laugh)

So I know you just published your first book, is that right?

LUND: I have.

SULLIVAN:  And it came out recently, or is it coming out?

LUND: It came out recently, it came out in May.

SULLIVAN: Yay! Congratulations.

LUND: Thank you very much! Thank you. Yeah, it’s one of those things where—and I’m sure other people experience this as well—you know, you go see your neurologist, you go to see your specialist, and they say, “Describe how you’re feeling, describe what it feels like.” And I’m like, I can’t describe what it feels like! Because the thing that I’ve got to describe this with is my brain, and my brain isn’t working, my brain is what’s broken. (Sullivan laughs) So how can I describe to you what my brain is doing when my brain isn’t working? But you get asked it over and over again, and it’s so, so frustrating.

And, of course, I was doing a creative writing course, and I was looking at this piece of blank paper, and I was like, that is just my mind; my mind is this piece of blank paper. So I drew a picture on it, and it was a picture of a face made up of words, and it was made up of the word “face.” So it’s a face drawn as the word “face.” And I’m like, that is what it’s like when I look in the mirror and I don’t recognize that that’s me. I know that that’s a face, I know that I have a face, but I can’t connect the two. I have a lot of problems with facial recognition. I remember one time walking into my sister’s bar when she was rooming in a bar and I was like, “That’s my sister, I have a sister,” but no connection in between the two that the person I’m looking at, no, that’s Allison, that’s her.

And I was looking at this [drawn] face and I’m like, well, that’s what it’s like. It’s like you’re a blank page, and you’ve got a picture made up of a word, but you’ve not got a face. So I started doing more of these, and then from that, really, the book came from those images.

It’s the story of a girl called Evie who has had sequences [of] seizures. She’s woken up in a strange landscape, and she’s trying to rebuild her consciousness in it. So she’s starting out with these very simple word pictures, and she’s going all the way through, she’s notebooking, she’s being set tasks by this rather sinister-sounding narrator to doing this notebook, and she’s working all the way through. And gradually, she’s taking back the narrative from the narrator until it’s her book, and until she’s fully writing this narrative. Because, what, of course she’s getting back, and she’s getting back her advocacy and her ability to use her language to describe what’s going on in her head and describe her feelings around her.

But I think the most useful thing I found about it was that I was able to show, in the book, that my brain isn’t a linear thing at the moment. It doesn’t have a narration that starts, finishes; it’s constantly interrupted, and it’s stopped because I’ve got limitations.

So the book actually has a second narrative in it, which is the world outside of Evie’s head, and that’s her friend Stevie and her family. And they’re sort of running side by side, but they can’t connect together.

SULLIVAN: Yeah.

LUND: Because that’s what disassociation feels like. It feels like, you know, you’re here on the left-hand page, and everybody else is on the right-hand page, and it’s a different tempo, and it’s almost a different feel to the language, and you just can’t come together. So even when both sides of the book are both talking about the same thing, they’re not connecting.

SULLIVAN: Yeah.

LUND: And then it’s interspersed with medical notes, and… It’s a bit like a choose your own adventure for neurological illness, really. So you have to decide how you’re going to read it and which bits you’re going to read, and you’ve got to backtrack on yourself.

It sounds, when I say that, really, really complicated, but I didn’t want to tell people that it’s hard sometimes with a neurological illness. I wanted to show people what it’s like to experience that neurological illness. So sometimes you’ve got to turn the book ’round, because you feel like you don’t fit into the world right, so your narration’s going the opposite way to the world. And you’ve got to backtrack, and you get interrupted, and you can’t connect with people.

SULLIVAN: Mm-hm.

LUND: But the whole point of the story is that you do move forward. So, even though she’s struggling in this book, she is moving forward. She is trying to get to this place where she’s gonna wake up, and she is going to end up back in the real world, and she is going to end up more clicked in, more dialed in. I didn’t know I was gonna do that when I started writing the book, but it was something that came about because of what I was experiencing, and just this frustration of people asking me “what is it, what is it like, what is it like?”

And I’m like, well, it’s like this. It’s constantly snowing in my head, and I’ve got pins and needles, and it’s cold, and I feel cold even when it’s sunny. So it’s got snow in the book. And it’s, yeah, it’s that way of saying “Well, it’s like this, and it’s quite difficult, but it does also feel worthwhile to keep going.”

SULLIVAN: Yeah.

LUND: And that’s the other important bit of the book. It’s worthwhile to keep going. And even though I’ve lost… Evie, in the book, she loses a lot of herself. She’s at this farm and she’s got nothing. You know, she’s in a completely barren, snow-filled landscape. But what she finds as she goes forward is she has things that she’s quite happy to let go, because they’re not part of her person anymore, but she has fundamental things about herself which she really isn’t gonna let go of. She has memories that she’s gonna try really hard to keep. She’s got her family out there in the real world that she is going to want to get back to because they’re important.

And that’s what I’ve found, that there’s things where I’m like, I’m gonna let those things go, because they’re gone. And there’s other things that are: I’m not gonna let those go, I’m not. I’m gonna absolutely refuse to let those things go, and I’m going to keep trying to have them, because they’re important.

SULLIVAN: Yeah.

LUND: But I think a book about what’s important as you try, and what’s important as you journey forwards, and sometimes sideways, and sometimes the other way bound in the book.

SULLIVAN: (Laughs) Yeah. That’s really interesting! How identity kind of forms and re-forms throughout your life. And I love the idea of how… A lot of times, the most basic way we describe neurodiversity is that our brains go in different directions, we think in different ways.

LUND: Yeah.

SULLIVAN: And I love that that can be practically seen in a book where you’re actually having to turn it, or you’re actually having to change the page.

LUND: Yeah.

SULLIVAN: —and that you’re almost making your neurodivergent brain accessible to folks who don’t have one.

LUND: Yeah.

SULLIVAN: It’s like a nice little inverse. It’s really interesting, thanks for sharing that!

LUND: Yeah, I think that’s what I wanted to do. I wanted to be like, well this is what it’s like, and here you go, and this is it on the page, take it and have it.

SULLIVAN: Yeah..

LUND: And, you know, there’s no right or wrong way of interacting with it as a book, and you can take from it what you want. You can treat it like a love story, you can treat it like a healing story, you can treat it like a choose your own adventure. You can take from it what you want.

SULLIVAN: Yeah.

LUND: But, while you’re doing that, you know, have that experience of: this is what it’s like for a lot of people.

SULLIVAN: Yeah, yeah. And what was the process of writing the book actually like for you in terms of your own disabilities? With the memory issues and stuff, were you able to do the traditional sit there and write a book thing?

LUND: No. And I think it’s interesting, the one thing that I found that I was still ok with was that— I’ve always loved writing. I’ve always loved reading, I’ve always loved writing, that’s always been the thing that I really liked. I sort of dropped it in my late teens when I went to university because I wanted to do something really different and never really came back to it. I wasn’t having any success with it, I was finding it quite frustrating, and I went, you know what, it’s just a fun thing and I’m not really gonna go near it. But that night when I was really, really ill, and I phoned my dad and said “Come home,” I couldn’t sleep, had really bad insomnia, and I just got my laptop out and I just wrote something; I wrote a short story. And I sent it off, and it won a competition; it won me 500 pounds, which was, like, the most money I’d had since I’d got ill.

SULLIVAN: That’s fantastic.

LUND: And I was like, “This seems to be one of those things that is very, very deeply rooted in me.” And that’s what is strange about neurological disorders. One of the things I couldn’t do at university is that I couldn’t structure an essay. I couldn’t work out how to structure an essay, I couldn’t start it, I couldn’t do a cohesive argument. But I could write a piece of creative writing. And quite what the distinction is in my brain with that I don’t know.

SULLIVAN: Yeah.

LUND: And when I came to approach the book I actually wrote it in quite an odd way. So I was doing these pictures, I’d started mapping out the idea that, you know, there was these two girls, and they were side by side, and they were journeying towards each other. And I actually wrote it as a fairy story, so I wrote a fairy story about these two characters, and one of them was cursed, and the other one was trying to journey to undo the curse for her, and she was meeting all of the characters that were actually in the book.

And then I sort of had that as a reference point. So as I was writing, I was looking at this strange fairy story, which was full of things like labyrinth maps and all sorts. And I think that was my way of structuring the story. So even though it wasn’t really a story structure, it was lots of strange pictures and little poems stuck together and strange conversations between talking birds; that was enough for my mind to hook onto and sort of guide me through. And then, at the time, I had an agent for it, a very good agent in London who was so helpful and is like, “Right, so now, what you need to do is you need to get rid of all these fairy story references and divorce it from that, because that is your structure, but it’s not something that the reader needs to see.”

SULLIVAN: Mm-hm.

LUND: So that was sort of how I planned it out. But the most difficult thing, for me, is that I will start writing and then, you know, suddenly it’s 12 hours later and I spent all day looking at a screen and not really noticed it.

SULLIVAN: Yeah.

LUND: And then that’s me for the next 3 days, is, you know, I’ve got a migraine, I don’t feel very well. So it’s a long process when you struggle with the equipment. But I can’t handwrite it, because I’m dyslexic, and my handwriting’s appalling. So I can’t handwrite it, screenwriting’s difficult, there’s no way I’m speaking it out loud because I can’t… You know, it’s almost like I need to be typing to process a thought.

SULLIVAN: Yeah.

LUND: So the most difficult thing was actually looking at the screen and having that screentime. It’s really, really difficult. And it’s one of the other reasons why the book is a physical book—which I know might sound strange when it’s a book which is sort of trying to share the idea of accessibility with people and an experience, but I can’t experience things onscreen, so I’ve written a book where you have to experience it on paper.

SULLIVAN: Yeah.

LUND: And if anyone has any ideas at all how to turn something with multiple directions and narratives and stuff into an audiobook, or into something that makes it accessible for other people, that’s great, but tell me how to do it, because I don’t know. (Lund and Sullivan laugh) But for me, it’s a physical book because that’s how I interact with words. And that is where I don’t struggle. I don’t have a Kindle; I can’t read online. So the screen part was the really difficult part for me.

SULLIVAN: Yeah. And you mentioned, just a minute ago, your dyslexia, and I was wondering about: Since you had some neurodivergences since your early youth and then some came on later, did the difficulties of dyslexia integrate with everything else, or are they sort of stacked? Do you know what I mean? Like, do you have different concerns with those different sets of traits, or are they all… together? (Laughs)

LUND: I think they stacked up all together.

SULLIVAN: Yeah.

LUND: I’m at the point with my dyslexia where I manage to find it amusing. So, it’s something that, like, I’ll completely misread adverts and think they say exactly the opposite of what they do, and I’ll be like, “That’s a really strange image to like with those words”—and I’m like, “Oh, that’s because you’ve just completely not read that word right.”

But I think it fits in quite well with what I have, because quite a lot of what I have is a sort of inability to interpret the world properly, which is what a lot of neur… Well, not “properly,” but on a par with everybody else.

SULLIVAN: Yeah, in the same— yeah.

LUND: In the same way. So it sort of feels like it fits quite well, really. (Sullivan laughs) It’s just another way that my brain isn’t quite seeing things the same as everybody else. And, I mean, luckily for me— I mean, I’m really bad at maths. And I shouldn’t say that, because I work in a job which involves measuring things. Practical math is alright, but any sort of abstract maths, absolutely not.

SULLIVAN: Yeah.

LUND: But that’s where my dyslexia’s worse. Whereas with things like reading and writing: I’ve got appalling handwriting. I can’t spell. So, the grammar bit was also really, really difficult. And thankfully, my lovely editors and my lovely proofreaders at my publisher’s, which is Atmosphere, you know, they took it away and they fixed it.

SULLIVAN: Yeah. (Laughs)

LUND: And I was like, “I’m really sorry!” I still can’t do commas and apostrophes, I get mixed up with that.

SULLIVAN: Yeah.

LUND: And I think everybody does, but.

SULLIVAN: I think a lot of people do, too. (Lund and Sullivan laugh)

LUND: But I think… Yeah, it just sort of fits in, because—(Stutters) oh, oh, excuse me —I can read very, very fast, I can skim read very, very fast. And I think dyslexia actually helps that because you’re not as committed to reading the whole word. Your brain is literally scanning and giving you suggestions.

SULLIVAN: Yeah. Mm-hm.

LUND: And, you know, 7 of those suggestions will be right, and 3 will be absolutely ridiculous, but on balance by the end of the page. You’ve got the idea.

SULLIVAN: Yeah!

LUND: So I think it actually started to help me, in a way, because I can do a novel in a night, and I think it’s because quite a lot of my brain is going (Pantomimes a hand running down a page) “Yeah, we get the general gist, we get the general gist, we get the general gist.” It sounds like you’re not appreciating the actual language of the book, but…

And if I look at some people’s dyslexia, it makes it very difficult for them to read. So again, it’s that thing that everyone’s slightly different with the condition that they have, and the way that mine presents actually fits in quite well with what I do when I write. It gives me that chance to proofread very quickly and look through changes very quickly. I just absolutely cannot proofread and edit my own work for things like spellings.

SULLIVAN: Yeah.

LUND: That’s just not going to happen.

SULLIVAN: Yeah. Thank you, that’s really interesting. I also, not being dyslexic myself: We’ve had a couple other guests who are dyslexic, and I’m always so interested to hear how it presents for different folks, because it does seem like there are so many differences, and that’s really cool.

LUND: Yeah, yeah.

SULLIVAN: Thank you. Your book is:

LUND: It’s called The Things We Left Sleeping, and it’s published by Atmosphere Press, who are an American publisher, so thank you very much America. (Sullivan laughs) When the UK have absolutely zero interest in publishing my book, America came through for me, so.

SULLIVAN: Yay! One good thing we’ve done in the past hundred years.

LUND: Lots of love. (Laughs) Thank you very much for that. And yeah, so I have my website, it’s KathrynLundTheAuthor.co.uk. You can link to it through my Instagram, which is klundtheauthor; same handle for Twitter. Or just put me into Barnes and Noble, or Amazon, or any big online retailer, and I’ll pop up, and I’m there.

SULLIVAN: Wonderful.

LUND: It’s not been out very long, so if anyone’s out there, honest reviews always welcome. Give it a read, give an honest review on something, help spread the word. It’s always really appreciated.

SULLIVAN: Wonderful, thank you. If you check the show notes below, listeners, I will have all the links to all of Kathryn’s things. So go follow on social media, go read the book. Support. Thank you so much for being here.

LUND: And if you follow me on social media, there’s an occasional picture of my two house rabbits, so if that isn’t a bonus for you—

SULLIVAN: (Gasps) Bonus! (Laughs)

LUND: Bonus bunnies if you follow me on any of my social media accounts. So there you are, I don’t know how else to bribe people into following me, but you’ll get an occasional bunny picture. I don’t know what more you want, really.

SULLIVAN: If people need more bribes than bunny pictures, I don’t know that the human race has any chance of survival, so. (Lund and Sullivan laugh)

LUND: No.

SULLIVAN: Well, thank you so much for being here with us today! I really, really appreciate it. Thank you.

LUND: No, and thank you, I was so excited when I came across your podcast, and I was like, “Yay! All the people want to talk about this as well and hear about it.” Because I think my friends are quite sick of me telling them “and another thing” about me. (Laughs)

SULLIVAN: Oh no. (Laughs) We will never be sick of it. I think I can speak for a lot of my listeners, and myself, obviously, when [I say] I just want to talk about neurodiversity ’til the cows come home. I will be here long as I can manage it because it’s so interesting. Well, thank you!

LUND: No, thank you very much.

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