POTS, Fencing, and One For All ft. Lillie Lainoff

Transcript

Courtney: Hello, everyone, and welcome back to the podcast. My name is Courtney. I am here with my spouse, Royce. And today, we have yet another fabulous guest, another fabulous author. We’re so excited for this conversation today, so let’s get right into it. Please introduce yourself for our listeners.

Lillie: Hi, everyone! I’m Lillie Lainoff, the author of One For All. Thank you so much for having me here. One For All is my debut novel. It’s a gender-bent reimagining of Three Musketeers with a main character with POTS syndrome. I’m also a fencer. I’ve been a competitive fencer since I was 9 years old, and now I fence and I coach. I recently graduated with my MA in creative writing prose fiction from the University of East Anglia. And, yes, I’m so excited to talk to you today about One For All and POTS rep and all the good stuff.

Courtney: Yes! Let’s do it. I’m so excited. Because when I was growing up, there were never any books that just fit so perfectly into all of the very niche experiences that I sort of inhabit. And now, as an adult, the last couple of years especially, I’ve started seeing more books and I’d read them and say, “Wait a minute! This is wild!” Because here, we have a book with a main character who has POTS — which is something that I have lived with since, I don’t know, symptoms probably started developing for me around 11, 12-ish — but also swords and fencing! I would say I am not as accomplished a fencer as you. I didn’t start when I was 9. I started a little later, probably around 17 or so. So this was, like, really height of my POTS symptoms, also, when I started fencing. But I love swords. I loved fencing for the years that I did it. So to have all of that in one book, I’m like, “Wait a minute.” [laughs] So we are so excited to have you here.

Courtney: First of all, let’s just talk about the POTS rep in the book. Because I’ve talked a lot about disability rep on this podcast, but I haven’t spoken too much about POTS itself. My sort of big recognizable diagnosis is Ehlers-Danlos Syndrome, and POTS is a common comorbidity, they say. And so POTS actually came up several years after my main diagnosis, because people were saying, “Well, why are you fainting? Why are you lightheaded? Your other thing shouldn’t cause this.” And I finally found the one doctor who knew what was going on with that. So I’d love to hear a little bit about your own personal experience with POTS and how you decided to incorporate it into a historical fiction, no less, where you don’t necessarily have the vocabulary back then to say what this syndrome is.

Lillie: Right. So, like you, I started experiencing POTS symptoms probably around when I was 11 or 12. And I was diagnosed when I was 14. I also have a fun — you know, I always like to say that almost all the chronically ill people I know, we have a constellation of chronic illnesses. [laughs]

Courtney: Yes.

Lillie: It’s never just one.

Courtney: That’s very true. [laughs]

Lillie: But I think that for me specifically, POTS, my POTS symptoms, and when my POTS was at its worst, that was a very foundational part of my life, just in terms of, I was starting high school, I was changing schools, and I was also dealing with this brand new diagnosis that nobody else knew about. I remember having to print out the Wikipedia page and my mom giving it to my relatives and them saying, “Well, this can’t be Lillie. Like, she’s done too much. She’s not this sick.” And they meant well, but that’s the very common refrain that I’ve heard from a lot of people, that a lot of chronically ill people hear: that it’s “Oh, you don’t look sick,” or “Oh, you’re able to accomplish such-and-such, so therefore. you must not be chronically ill,” or “Therefore you must not be disabled.” Which is wrong because chronic illness and disability are a spectrum and they look different for everybody.

Lillie: But I also… Since I started fencing when I was 9 and I started competing when I was 10, I spent very little time fencing before I started having POTS symptoms. So for me, the two are inextricably linked. I can’t really think about… or I can’t really remember a time when I was fencing when I didn’t have POTS symptoms.

Lillie: So when I started writing One For All, this was after I had already had a novel out on submission to publishers, which didn’t sell and had a cast of almost all entirely disabled characters. So when I started writing One For All, I… for the first paragraph of the draft, I didn’t have in mind that Tania was going to have POTS and that Tania was going to be chronically ill, because publishing [laughs] has its problems. And it’s really scary, after spending so much time and energy and effort into this one book that I loved and still love so much, to have it shot down over and over and over again, to then say, “Okay, I’m going to write another book that could have very similar responses from publishing, and I’m going to spend that time and effort and energy and things might not work out.”

Lillie: But after that first paragraph, I realized that Tania’s story needed to reflect my own and that, like I said before, because fencing and POTS were inextricably linked, I really wanted to write about the experience of a fencer with POTS — you know, my own experience. So I quickly changed my draft, and it’s been that way ever since.

Lillie: As far as writing about POTS in a historical context, where the terminology that we have today might not have been present, POTS was really only a diagnosis in the late 20th century. So it is a very new diagnosis, even though we have records of people having symptoms very similar to POTS, probably POTS, since probably around the Civil War, I think, and predating the Civil War, at least in the US alone. So the way that I came at it was: POTS has such a variety of symptoms, even though —

Courtney: [laughs] Yes.

Lillie: Yes, right? So the main one that people know about is dizziness and fainting. But there’s also the POTS headaches, there’s the brain fog, there’s the stomach issues, there’s the way that some of our feet turn purple and gray because of the blood pooling in our extremities. There’s all of these different things. So, I thought about the symptoms that were very visual — so, like, the feet turning purple and gray. I thought about symptoms that I could describe in a way that didn’t require medical terms but still felt authentic to Tania’s perspective. So, for example, in my version of a fantastical 17th century France, there was no term for “heart rate,” but Tania can realize when her heart is pounding fast, so she notices that. There might have not been a term for brain fog, but Tania could tell when it was harder to think and harder to verbalize what she was thinking about.

Lillie: So I came at it from that perspective. And kind of just building, building, building throughout the novel all these different symptoms, so that, by the end there was kind of this full, full experience of POTS. And not to say that’s everybody’s experience of POTS, because everybody’s experience with POTS is different, but at least for Tania, Tania’s experience of POTS was — by the end of the novel it had kind of come together in a way.

Courtney: And I really… I mean, I commend you. I think it was beautifully done.

Lillie: Thank you.

Courtney: And for anybody who has POTS, I think there will be at least some symptoms or phrases in here that are going to be very recognizable and relatable. But it also paints a really nice picture for someone who hasn’t dealt with this and doesn’t know what it looks like. In fact, just right at the top of Chapter 3, I underlined this sentence because I loved it so much. I was like, “I know exactly what that is,” and it was also a bit poetic. When she has one of these dizzy spells, it says, “Black petals blossomed before my eyes, more recognizable than any flower in the garden and darker than the center of a sunflower.” And I was like, “Oh, yeah. I know exactly what that is.” [laughs]

Lillie: Yeah, no. I think that one of the things that was really important for me is that Tania’s point of view, first-person perspective, it’s very much rooted in the natural. So a lot of her descriptions of things are rooted in flowers and blooming, which very much stems from the fact that she grew up in Lupiac, which is not Paris. So, she grew up in the countryside of France, and her experience is one that’s rooted in that countryside. And then when she goes to Paris, which is very different than Lupiac, she still brings that tendency to describe things in that way with her.

Courtney: And I also really just appreciate it because, being someone who is involved in anything active, anything like a sport… For me, before I took up fencing, I had been in dance training for years. I started dance when I was, like, 3. And my dance career was always so funky [laughing] because I could do these really incredible contortion tricks because of my hypermobility. It took me a while to get a full sort of command of my body, but once I did, I could dance. But sometimes, I would get offstage and just collapse. And I couldn’t go jogging, I couldn’t go jump-roping, and yet I could do these really complicated dances, at least for a temporary period of time.

Courtney: And that was always so difficult to explain to someone: why I can do one thing but not another thing. Because in one context it could look like I’m incredibly physically able and physically accomplished. And that’s something that you touch on as well. Because you have Tania saying, “Well, I can fence when I’m dizzy.” In her case, her father taught her how. And she acknowledges when she might not be, you know, as steady as others, but she has the passion to really try and really put in the work to get on that level. And I can only imagine that that also perhaps came from your own experience.

Lillie: Mhm.

Courtney: Because that felt familiar to me.

Lillie: Right. Yeah, no. So I, before I got POTS I was in the top ten in my age category, nationally, for fencing in the United States. And then that went very far downhill once I developed POTS symptoms. So I think that the moment that I remember most viscerally is fainting right after a bout at a North American cup, and the athletic medic team just panicking because they had no idea what was going on — even though, to be clear, because of USA Fencing guidelines — which I think are a good thing, you know, you have to put in if you have some sort of condition. That way, the medics know and can help you properly if there’s a medical emergency. But there’s seeing it on a form, and then there’s actually seeing somebody faint. [laughing] There’s a difference. And I remember them trying to find my pulse, and they couldn’t find it, and they were panicking. And my mom is going, [casually] “No, it’s fine! She’s okay.”

Courtney: “This happens.” [laughs]

Lillie: “This is normal.” “What? This isn’t normal. We can’t find her pulse!” “She has the POTS thing. Sometimes their pulse is weak, their pulse is strong. It goes all over the place, don’t worry.”

[Courtney laughs]

Lillie: But I, at that point, had really struggled competitively for the past year with — I didn’t know it was POTS at the time, but with dizziness. And fencing masks, because of the metal mesh that goes over them that protects your face — it’s kind of like a grid, but it’s it’s not a wide grid, it’s a narrow grid. And when you’re dizzy and you’re looking at that mesh, it kind of just blurs together, so you can’t really see anything.

Lillie: So I was fencing, unable to really see my opponent, with POTS messing with my depth perception — which, I think, was the biggest thing, was not being able to really tell where you are in space — and then all the other associated symptoms, which, while not directly impacting my fencing, they just impacted my ability to function, which is the headache and other stuff.

Lillie: So, at that point, I was spending a lot of practices on the sidelines, too dizzy to fence. So my coach would give me the fencing lessons in his rolling office chair. And I slowly started getting to the point where I could fence again. And I was very lucky in the sense that even though my POTS symptoms were not minor, they were definitely not mild, the doctors who I spoke to when they diagnosed me told me that because of fencing, because fencing had strengthened my legs so much and my blood vessels so much, it actually prevented my blood pressure from dropping as much as it typically would. The heart rate is another story, but it helped me keep my legs strong. And so I was able to come back to fencing a bit more quickly — with the dizziness, but not as much of the fainting.

Lillie: So at that point, when I was 14 or 15, I actually had this opportunity to fence the same fencer who I had fenced against and lost and fainted, and I won. And it was this just really wonderful full circle moment.

Courtney: That sounds like a novel in itself. [laughs]

Lillie: Yeah! It was. And I really struggle with the idea of, you know, “overcoming POTS,” because you don’t overcome a chronic illness. It’s not like it goes away anywhere. It’s not an accessory; it’s not a handbag that you can just set down and all of a sudden it’s like, “Oh, bye! Don’t have to deal with that anymore.” We don’t have a lot of those full circle moments, so to have that full circle moment was a special gift.

Lillie: And I just learned different ways to deal with fencing while dizzy. And it helped a lot that in college, the bouts are only to 5 points, and they’re not to 15 points, so I was able to fence shorter bouts and I was able to be more successful. But fencing while being chronically ill, while having POTS, I mean, it’s incredibly difficult. It still is incredibly difficult. And I love this sport, but… It is difficult but worth it, very much worth it.

Courtney: And you said you also coach now as well. Did that sort of come from just a passion to teach and coach or was a part of that, “Well, I can’t really fence as much as I would like to, but it can still be a part of my life in this way”? Because I know, for me, I taught dance lessons for a number of years, like 15 or so years. And part of that overlapped with my actual dancing and performing, but after I really just could not dance as much as I wanted to, I leaned far more into teaching and coaching. So I was just curious about your experience with that.

Lillie: Right. I think it’s a combination of a few different things. I’ve always loved teaching and coaching. I started coaching when I was a teenager, before I left for college. And then, during the summer when I would come back, I would coach. I also started teaching creative writing at local nonprofits around that time, too. So I really like teaching and I really like coaching.

Lillie: From a writing perspective, I can’t remember where I read this, but somebody was quoting a professor that they had about the idea that the number of books that you can write in your life is finite, but if you teach, the number of writers who you can influence, the number of books that you will influence, is infinite. And I really love that idea.

Lillie: As far as me coaching now, a lot of it is, you know, I can’t fence as much as I would like to anymore, but also, it’s really important for me. Because when I was starting to fence, I was the only girl in my class. And then I switched fencing clubs. I switched fencing weapons: so, I used to fence foil, and then I fenced sabre. For those who don’t know, there are three different kinds of fencing: there’s épée, foil, and sabre. Sabre is kind of the closest to Pirates of the Caribbean fencing. My friend calls it the slash-y fencing. You hit with the sides of the blade and not the tip, so it ends up being a lot faster. And I maybe had two other girls in my class who were within two or three years of me.

Lillie: So when I came back after college, I thought it was really important that young girls got to see a coach who was a woman. Fencing coaches who are women are — there are finally more of us. We finally got the first woman coach as an Ivy League fencing coach for both men’s and women’s teams, like, just the other year.

Courtney: Wow.

Lillie: [laughing] We are very, very behind. Daria Schneider at Harvard. And I think I’m one of the only women’s sabre coaches in the DC/Maryland/Virginia area. There are épée coaches and foil coaches who are women in the area, but I think I might be one of the only women for sabre.

Lillie: But it was really important to me, because when I was a little girl, when we would watch movies, for instance, at summer camp, at fencing summer camp, we would watch movies like The Man in the Iron Mask — which was my first introduction to the Three Musketeers, actually — and The Princess Bride, and — they’re technically both books into movies, I guess — and I love them! But none of the women had swords. And it was really weird to be at a fencing camp and watching this movie and not seeing anybody [laughing] like me with a sword, and then being surrounded by other boys. It was just — it was a very strange experience.

Lillie: So it’s really nice to see how this sport has changed, women’s sabre fencing. Mariel Zagunis won the first-ever women’s sabre Olympic gold medal. We didn’t have an Olympic women’s sabre event until recently because sabre was considered too dangerous for our fragile female bodies.

Courtney: Mmm. [laughs]

Lillie: But I’ve seen… As the US women’s sabre team has done so spectacularly well at the Olympic level, at the international level, I’ve seen a lot more little girls show up to start fencing.

Courtney: Oh, that’s wonderful.

Lillie: And there’s always a huge rush the year after the Olympic cycle. So I’m really looking forward to Paris 2024, because I know that there will be another huge rush of girls wanting to fence. And now, I think that, you know, there’s a pretty even split, that there’s girls and boys and nonbinary students just in general across the board in fencing classes, and it’s just really nice to see that they’re able to have that experience that I didn’t have.

Courtney: Yeah, that’s so incredible. I mean, there are so many sports and professions where there is still very much a gender gap. But that’s also really complicated when you add chronic illness on top of it, at least I find.

Lillie: Mhm!

Courtney: Because on one hand, you’re like, “Well, I want to be the woman in the room. I want to be the positive female role model, and I want to show that we don’t just have these weak, frail bodies that can’t do these things.” And then, on the other hand, you kind of do have a weak, frail body sometimes. [laughs]

Lillie: Yeah. Yeah. And it’s also interesting, too, because I’m now at the point where… When I left for college and was coming back to coach the kids in the classes, they still knew me because I had been their teammate recently. So they knew about POTS, or they knew at least that I was sick. But now, it’s been long enough that these competitive fencers — they don’t know my condition. So sometimes when I fence and I get really sick or dizzy and I have to, like, put my legs up against the wall, or I have a really bad POTS flare, they are very confused. But they’ve been really understanding. And I think that the thing about it is that adults are really weird about disability and chronic illness.

Courtney: Yeah.

Lillie: They’re so weird. When I had a really bad POTS flare and I was trying to coach a class of 20 students and I kind of, you know, had to raise my voice a little bit, I said, “Listen, I am very sick right now. I really need you all to focus and listen and help me out here.” And they were so well-behaved for the rest of the class. They get it.

Courtney: They do!

Lillie: They get it in a way that adults don’t. Because they haven’t been taught yet to be afraid of chronic illness and disability, I think, at least for the most part. I think that it’s also hard, too, because, I mean, fencing has an ableism problem, just like every organized sport has an ableism problem. I think that, for example — and I think that USA Fencing has been listening, and I’m very impressed with how they’ve pivoted some of their language usage, but there was an issue a while ago where they were equating disabled fencers to para-fencers.

Lillie: And not all disabled fencers are wheelchair users. And I think that, too, there’s this issue of… people don’t realize, at least from what I can tell — I think that there’s probably a higher rate of disability within the athletic community than there is just in general. Because, if you think about it, stuff like post-concussion syndrome, injuries that haven’t healed well, or repetitive injuries, most of the athletes who we know that retire early are retiring because of disability, because of injuries, but we don’t call it that. We don’t talk about it like that because, again, we have this obsession with the idea that disability equals weakness and that disability and athleticism can’t exist within the same body.

Lillie: So I try to be as open about my disability and chronic illness as possible with the kids and with the other parents. But I think, too, that it’s also helped me as a coach. Because I think that every athlete has heard before, “Oh, you’re not… You’re fine, keep running.” Or, “Oh, just a few more laps.” Or, “Oh, suck it up,” or stuff like this, right? So when a kid comes to me and says, “Oh, my head hurts,” or “Oh,” you know, something like this — to be clear, if a kid says they got hit in the head or something that is very clearly potentially an injury, I’m like, “No, you go sit down.” That’s not even a question. But if it’s a question of, “Oh, I have a headache, I don’t know if I can keep going,” the thing that I always say is, “I do not know your body. I am not going to tell you whether or not you have to sit out or whether or not you have to keep going. You have to make that decision for yourself. But if your pain gets worse at any point, I will make you sit down. You will have to sit out.”

Lillie: And I wish I had had somebody say that to me when I was younger, because so often, I… you know, chronically ill people are told, “Oh, your symptoms are all in your head,” doctors trying to tell you how your body acts or what your symptoms are, as if they know your body better than they do. And I don’t ever, as a coach, want to assume that I know how an injury feels or a headache feels for another student.

Lillie: And usually what ends up happening with students is, if they feel like they need to sit down, they sit down, and then they come back in 10 minutes because they’re in a comfortable space where they don’t feel like they’re being punished for being sick or being injured — they’re not being punished — but that also, they’re being told that they can trust themselves and how they feel.

Lillie: Because that is the insidious part of “Oh, it’s all in your head” or “Oh, you’re not actually feeling these things,” is that you start to believe it. You start to think, “Okay, well, maybe I am, maybe I am imagining it. Are my symptoms real?” And it just turns into this whole bright feedback loop, awful feedback loop of medical gaslighting. And it’s really hard to distinguish your symptoms from… in reality. And it’s just… it’s rough.

Lillie: So I’m hoping, I think, that, at least from what I can tell, this younger generation of chronically ill people seem to be, if not dealing with that less, they’re coping with it in healthier ways, in terms of, they have access to talk to other disabled and chronically ill people who can tell them, “No, like, you are actually… Your feelings about this are valid. Nobody needs to validate your symptoms for you. Your experience of them is your own experience,” because of things like social media and just a wider understanding about chronic illness and disability — which, I mean, the bar is so low.

[Courtney laughs]

Lillie: Like, we really need the bar… The bar is subterranean, but I think that we’re slowly but surely getting there.

Courtney: Yes! And that is so important, to speak to kids that way, whether they are chronically ill or not, whether they might become chronically ill later in life or not. Because when you also pair it with a sports context, at least at the time I was growing up — I hope some things are changing — but it was very much a mentality of, like, “Fight through it.”

Lillie: Exactly.

Courtney: Like, even if it does hurt, even if there is something wrong, like, just keep going, push yourself harder, because that’s what we do. [laughs] And it is really unhealthy. Because when you also pair… Say, like, “Oh, well…” Especially kids, we just infantilize them [laughing] way more than they deserve. Because people say, like, “Oh, well, they’re probably just trying to get out of class,” or like, “Oh, they’re just bored,” and that is very rarely the case, I find.

Courtney: But when you do get all those things — “Oh, you’re lying,” or “You’re faking” or “Just fight through it anyway” — then kids who do grow up and realize, “I am chronically ill. I do have a disability or a constellation of disabilities,” as you very aptly put it, then you start to realize exactly how abnormal a lot of your individual experiences actually are. Because I always knew there were a couple things here and there that were weird, but I’m still, to this day, finding things that are so natural and normal about my body that I’m just now realizing, “Oh, not everybody is like this? Not everybody? That’s just a me thing? That’s just for POTS or EDS or MCAS or any of these other things that I have.” So it really also hinders, like, learning and education and self-exploration, to really get to know yourself and to know what’s normal.

Lillie: And I think, too, something that struck me about what you said in terms of what’s normal for us. And one of the reasons why it took me a while to get diagnosed — and, to be fair, my diagnosis time for POTS was quite quick. Two — only a couple years is quite quick for POTS.

Courtney: Oh, wow!

Lillie: I think the average diagnosis… Now, to be fair, because of so many people with Long COVID are being diagnosed with POTS, the average diagnostic time has gone down.

Courtney: Interesting.

Lillie: There’s still some studies being done about that. However, the most recent data that I saw, in terms of average diagnostic time, it was over 6 years.

Courtney: Oh yeah, mine was well over that.

Lillie: Yeah. So I remember, when I was first being told about POTS, I was like, “Wait a second. It’s not normal for your vision to completely black out when you stand up? I thought that happened to everybody! Nope.”

Courtney: Yeah, you don’t know it’s normal until other people can see.

Lillie: Mhm.

Courtney: You don’t know it’s not normal until you faint and someone freaks out. But everything that’s just happening behind your own eyes, in your own head, you just rationalize it away.

Lillie: Right. And I think that’s been one of the most interesting things about writing One For All, has been, like, the reader response that I’ve gotten in terms of people saying, “Oh, Tania has this symptom. I didn’t know that that was a POTS symptom, or that was a symptom of chronic illness. I have that! I need to go to my doctor.”

[Courtney laughs]

Lillie: Yes, please do that. Please go to your doctor.

Royce: I was going to say, some of that is complicated too, when broader society may sometimes experience a… I guess, more minor symptom that, if you don’t really dig into your language, is vaguely familiar. Because I think people without POTS or without other conditions that may affect dizziness or things like that may have a moment where they stand up too quickly. And if you don’t really dig into how frequently this has happened or what is the exact condition that you’re feeling and get into it, you may not realize that you’re experiencing two different things.

Royce: I had an issue where, due to chronic social anxiety, I would faint or come close to fainting while giving presentations at school. And part of me taking so long to realize that I had a chronic anxiety condition was because this was just written off. Because “sometimes kids just faint,” is what I would be told. Like, sometimes my mom would just get lightheaded in an elevator and people would be like, “Well, yeah, that happens to kids sometimes. Sometimes kids faint when you cut their hair, and that’s just the world we live in.”

Courtney: That’s what happened to me. The very first time I ever fully fainted, lost consciousness, I was actually in the shower, and [laughing] scared the living daylights out of my mother, of course. So she rushes me to the hospital, and we had just the worst experience in that ER. The doctor was so dismissive and he was so rude. It was like, he very much had the air of, we are wasting his time. Because he was like, “Yeah, it’s because he was washing your hair. That’s why. Sometimes, kids faint when you touch their hair, and that’s fine. It’s probably not going to happen again, and if it does, it’s because of your hair.” And my mom was so dissatisfied with that. She’s like, “No, my daughter just fainted in the shower. Like, she could have hit her head. Like, what if I wasn’t home? This could be really, really dangerous.” And he’s like, “What do you want me to say? It’s because of the hair.” [laughs]

Lillie: That is wild to me.

[Courtney laughs]

Lillie: I just have never… I mean, I’m glad that I’ve never heard that. The big thing for me, in my long trek to diagnosis, was, one of the biggest things that I was told was, “Oh, Lillie’s just type A.”

Courtney: Oh, no. [laughs]

Lillie: Type A makes you faint and dizzy and sick all the time? That’s what being type A is? That’s confusing. And then, of course, like, “hypochondriac” and all that other stuff. But also, showers are super dangerous when it comes to fainting and for POTS.

Courtney: Yes!

Lillie: And if anybody’s listening and you have POTS, please buy a shower chair or a stool, please, please, please.

Courtney: Yeah! And that was just wild to me. Because also, of course, like, that was only the first time I fainted. Then it started happening all the time in other contexts. And we were like, “Hey, doctors! I wasn’t washing my hair this time. What do you got for that?” And they were like, “Oh, you’ll probably grow out of it.” [laughs]

Lillie: Yeah. The “growing out of it” comment I’ve heard a ton of times. And I think that also, like, even amongst doctors who specialize in POTS, there was this — at least when I was diagnosed and when I was a teenager — I don’t know if they’re still telling kids this, and I hope they’re not — there was this, like, “Almost everyone grows out of it when they become an adult.” And I remember talking to another teenager with POTS at that time. And he said, “You know, every single adult that I know who was a teen with POTS still has POTS.”

Courtney: Yeah.

Lillie: So what exactly are they basing the statement on? I don’t know where this data is coming from! And I don’t know if, partially, it’s to kind of give comfort to chronically ill teenagers or parents, but that’s not a very good way to comfort somebody. I mean —

Courtney: No.

Lillie: — lying to people about their chronic illness is the exact opposite of making somebody comfortable.

Courtney: Yeah. And I know in my case, and I don’t know how common this is or if that could be where the basis is for that — because I’ve heard people say similar things, so I don’t know if this is where that’s coming from — but I do now actually lose consciousness a lot less than I did as a teenager. That doesn’t mean the dizziness is gone. That doesn’t mean that other symptoms are gone. And I still will occasionally completely faint. But there was a period of a couple of years when I was a teenager where it was, like, every other day, I would completely be laid out and lose consciousness. And so I don’t know if it’s just that very observable, “Well, you’re not actually hitting the ground like you used to be, so you’re fine.”

Lillie: I think, too, a lot of it is that, like many chronic illnesses, POTS is a moving target. It’s not… You don’t have the same symptoms always, right? You can go… There are POTS flares. You can have remission and respite from it. But then you can develop new symptoms. Like, for example, I recently developed, like, my fingers get numb.

[Courtney laughs]

Lillie: That’s weird! That’s from POTS, but that’s a new thing. That’s only in the past year, and it’s been over a decade since I was diagnosed with POTS. And it’s like “Oh, all new symptom. That’s fun.”

Courtney: Mhm. It changes. It fluctuates. In different days, there are different severities. I frequently have a random part of my body go numb. [laughs]

Lillie: Yeah. It’s one of… I think I’ve heard it said, “Is this a new chronic illness symptom? Am I dying? Who knows?”

[Courtney laughs]

Lillie: — like, kind of thing. But yeah, no, it’s — I think that, if anything, I’ve learned to deal with it in a better way and, you know, to be like, “Okay, this is probably a new symptom.”

Courtney: And to listen to your body better, too. Because, you know, the world doesn’t really allow children to listen to their own bodies. So as you come into adulthood as a chronically ill adult who was a chronically ill child, that’s a whole new skill you have to learn — all on your own, usually, because usually, no one’s going to teach you.

Lillie: Yeah, but I do think it’s also — right? — it’s unlearning a lot of the stuff that you’ve been taught, whether that’s by doctors or just by society at large. You’re having to teach or to unlearn the ableism that they forced upon you and a lot of the internalized ableism that has been forced upon you.

Courtney: Definitely. And I know… I mean, when I first met Royce, for example, I wasn’t losing consciousness several times a week like I used to be, but I knew it happened sometimes. So I was like, “Just to be safe, I better mention that this is a thing that happens sometimes, and I’ll be back soon if it does. Like, no need to call an ambulance.” Because that’s actually, oddly enough, one of my bigger fears about fainting, is that it’s going to be somewhere in public or with someone who doesn’t know and they’re going to just, like, freak out and call an ambulance. Because ambulances are expensive. [laughs]

Lillie: I had a very — yes! And I had a really interesting experience with that in terms of when I went to my master’s program, I was in Norwich, in England, and I got very sick at one point. And my roommate called some person — I don’t know if it was actually an ambulance or not. I was panicking!

Courtney: “No, no, no, don’t do that! I’m an American!”

Lillie: I was like, “Don’t — I don’t want to go to the hospital. No! No!” And they’re like, “Why are you so worried?”

[Courtney laughs]

Lillie: And they went, “Oh, right, you have to pay thousands of dollars at home, don’t you?” I said, “Yes.” They’re like, “Oh, no, we don’t pay for going to the hospital here. That’s not a thing that we do.” But oh my gosh, yeah, no. And I think that, too, the idea of, one, somebody not understanding and calling an ambulance, but two, that’s also — not even just how much money it is, but also, the added stress of, you know, we know how best to recover after fainting or after a POTS flare. All of a sudden being surrounded by paramedics who, you know, are just doing their job, but having to try to explain to people when you’re still dizzy. It’s like, “No, no, like, this is POTS.” That’s difficult to try to explain to people when you’re dizzy.

Courtney: Yeah. Or people who try to get you to stand up immediately, like, “Come on, walk it off.”

Lillie: Yeah.

Courtney: “Show me that you’re alive.” [laughs]

Lillie: It’s like, “Absolutely not.”

Courtney: No. Actually, the… And I’m just thinking to all of the major reactions I’ve gotten to fainting. Normally, after I knew that this was just the thing that happens sometimes and “Don’t call an ambulance, just chill for a sec, everyone,” I did start warning people. And I’m so glad I warned Royce, because I did actually end up fainting on one of our first dates together. And I think you caught me. That was a baller move.

Lillie: Aww!

[Courtney laughs]

Royce: I can’t remember!

Courtney: You can’t? I’m pretty sure you did, because the way I was laying was very graceful. [laughs]

Royce: I think the first year that we knew each other, you were still fainting quite a bit. Well, quite a bit by my standards.

Courtney: Yeah.

Royce: But you had gotten enough control of it that basically, as soon as the dizziness would hit you, you would adjust to, like, brace for impact.

Courtney: Like, “Oh, no.” [laughs] “I’m going down.” [laughs]

Royce: Generally, even if I was across the room, you’d usually get to the floor probably while still partially conscious.

Courtney: Or I’d be, like, halfway across the room and, like, a leg would just go numb, and I’d be like, “Royce, help me get to the couch. My left leg has gone.” So it’s really nice to have a supportive partner when you have disabilities. Because I have had previous partners that were not so supportive.

Courtney: But I’ve even had medical professionals, like, way overreact to me fainting in ways that have been really alarming at times. I was getting my blood drawn once as a teenager, and I fainted while they were drawing my blood. And then, this was the first time I had — they called it at the time a “pseudo seizure.” Like, my whole body was shaking, and it wasn’t actually a seizure, but it looked like one. And they were, like, calling codes, and they were like, “911, like, someone get an ambulance here!” And it’s like, you’re medical professionals. I am at the doctor’s office. So everyone was rushing and freaking out, and I was like, “No, it’s fine, calm down.”

Lillie: Yeah. It’s also just alarming that they didn’t know what fainting when you’re seated looks like, because it looks completely different. Because I don’t think people know that when you faint when you’re seated, it looks completely different than when you’re fainting when you’re standing up, right? Because it does look a bit like a seizure because of the way that your body reacts, because it needs to be lying down, it needs to be on its side for airflow. And when you’re seated and you’re fainted, your body just doesn’t really know what to do.

Courtney: [strained] “What do I do?”

Lillie: Yeah, exactly.

Courtney: Yeah. And it was wild because once I came to, they were like, “Alright, I guess we’re okay. I guess we aren’t going to rush you off to the ER.” But I was like, “Why is this news to you? I would suspect that this is the safest place for me to do this at, because I would think that you’d be prepared for it.”

Courtney: But actually, the most deeply unpleasant coming-to experience, I suppose, that I’ve ever had was when… it was the end of a jazz festival, an outdoor music festival, that I was at — pretty small one, nothing huge — and I was there with a couple friends of mine. And we were just walking back to our car at the end of the night and none of us were even drinking. It was a very low-key event, not, like, a big wild party or anything. And I fainted on the way back. And my friends knew me very well. They knew how to take care of me; they were completely fine. But there was a cop that saw me faint. And to him, that was horribly suspicious. So he comes over and he starts ordering my friends around and he starts shining his flashlight directly in my eyes —

Lillie: Ohhh…

Courtney: — and grilling me about, “What drugs are you on? What —” And it was horrible. And of course, my friends were trying to say, like, “Hey, get off her. She’s got a condition. This is normal. We know how to take care of her.” And he was just having none of it. The cops in my hometown were very, very mean to me [laughs] on more than one occasion.

Lillie: I think police in general need better disability training. But —

Courtney: Yes. [laughs]

Lillie: Yeah, no. I think that being chronically ill as somebody who’s an older teenager, or an adult, too, is also — it’s looked upon with a lot of suspicion, more so than I think I was as a chronically ill tween or younger teenager. So even just when I use the accessible seats on the Metro, I get dirty looks. Because it’s like, “Well, you shouldn’t be using that seat. You should be giving that up for somebody else.” Like, actually, I need this seat. And yeah, no, I think that people just automatically react in a very strange way.

Lillie: And especially because of the POTS symptoms as they are — you know, the dizziness, the fainting — I’m sure you also did not react well to the flashlight. Which, when you said that —

Courtney: Oh, it was —

Lillie: — I had a full-body… ugh.

Courtney: — awful.

Lillie: Because of how —

Courtney: It was terrible. [laughs]

Lillie: Yeah. The flashlight… Especially, you know, a lot of people with POTS, like, get migraines or headaches and are light sensitive. So I’m just… Oh, gosh. Even just the… oof.

Courtney: It made it so much harder for me to get back to myself.

Lillie: Yeah.

Courtney: No. It… ugh, yeah, it was terrible. But, yeah, so… And also, I very frequently walk with a cane, and I have for years. And actually, my first cane was a sword cane!

Lillie: Oh!

Courtney: So that’s fun! I don’t know if sword canes are legal where you are. Different states have different sword cane laws.

Lillie: Honestly, I don’t really know any more in the US. I mean, they’re letting people carry around anything they want at this point. So I think that a sword cane should be fine.

Courtney: Yeah. Well, we happened upon a sword cane that had, like, a snake on it.

Lillie: Oh, cool!

Courtney: And we have a pet snake. We had two at the time. And so I was like, “A snake and a cane and a sword!” And it just happened to be exactly my right height. So I was like, “It’s fate. Got to get it.” But then we got home and we were like, “Wait a minute, we should probably look up concealed blade laws in the state.” And Royce, you can probably relay them better than me. Because in our state they’re very legal, hilariously so. This law was really, really funny, actually.

Royce: Yeah, the funny part for me was, I had looked up these laws a few years before I met Courtney, so I thought I knew what they were. And they had changed pretty recently to basically be: everything is legal except for ballistic knives, which are federally illegal, and, for some unexplained reason, throwing stars.

Lillie: Mmm.

Royce: But I think that it was specifically —

Courtney: No throwing stars. [laughs]

Royce: It was specifically written in: sword canes, even ones that can defy metal detectors, are legal.

Courtney: Yeah! Even —

Royce: I don’t know who on the commission had a sword cane like that, that they really wanted to get written into the law, but it was oddly specific.

Courtney: It was… yeah. It was like, “Even swords made of unconventional materials that may defy metal detectors are perfectly legal.” It’s like, oh, okay. [laughs] Good to know.

Lillie: That is a choice. It is a dangerous choice, but it is a choice.

Courtney: It was one of the weirdest weapon laws I’ve ever read in my life, so. But yes, I am an appreciator of swords, which, of course, only grew after I took up fencing. And I got pretty good at fencing. I never did big tournaments, but we did bouts in our own little local club. And then I got a sword, and I actually… I’ve promised our podcast listeners that I will eventually tell this story, so maybe this is the episode where I tell this story.

Lillie: Oh!

Courtney: One time, I accidentally pulled a sword on a couple of Mormons.

Lillie: Oh. That’s interesting.

Courtney: And… So when I was 17, just about to turn 18, I bought this really dirt cheap, ratty, run down trailer house in a trailer park. And it was mostly because, when I wasn’t 18 yet, I couldn’t, like, legally sign a lease, but I wasn’t living with parents, so my living choices were so complicated. But I could technically buy this trailer, and all I had to do was pay a very cheap lot rent every month to stay in this trailer park.

Courtney: But they had very, very sketchy rules when I moved in. And the things I had to sign — which must have been legal, I don’t know, but they’re in control of whether or not people can live there, so I guess they can do whatever they want. But when I moved in, they made me sign this contract saying that if cops come to my house for any reason — whether it was me who called them, someone else who called them on me, whether I was calling them on someone else — they’re like, “If you are the reason cops are in this trailer park, we will evict you.” [laughs] And I was like, “Oh. Alright. Well, that’s… Where’s the meth lab?” [laugh]

Lillie: Sounds like a problem for multiple reasons.

Courtney: So I was like, “You know what? That’s fine. I’m not too fond of the cops in this town, because they’ve been cruel to me for years, so I won’t be calling the cops. No problem.” Sign their thing. Moved in. And this was not the sketchiest trailer park in town, but it also wasn’t the nice trailer park in town, and it was right next to the interstate and next to a, like, walking trail. So we would occasionally get people who were coming around who were either clearly on drugs or possibly having a mental health issue.

Courtney: And one time I was home alone. I was 18 at this time. And this very large man just starts banging on my door and it’s… He starts, like, yelling and, like, yelling for me to come out. And I was like, “Not answering that door. Absolutely not.” And so I just went about my business, and he went around my house and found the window that I was sitting next to and then started banging on the window and yelling at me. And I just yelled, like, “Get out of here!” and closed my blinds. And I was like, “Alright, we’re going to wait for this to go.” He banged on my back door, my front door, every single window. And then, things were quiet for a bit, and so I was like, “Alright, I guess he’s gone.” And I was like — because here I’m now at this point where, for a prolonged period of time, he’s banging on my house, and I’m like, “I can’t call the cops!” [laughs] “But what am I going to do here?”

Courtney: And then, after a period of time, I hear another rapping at my door. And so I was like, “Alright, time to fix this.” I grab my sword. I answer the door, and I said, “I told you to get out!” and I pull it. And there are two little Mormon boys [laughing] —

Lillie: Oh no!

Courtney: — at my door in their tie, holding their books, and they just have this look of horror on their face. And I was like, “Oh no! I’m so sorry! [laughing] I thought you were someone else.” They declined my offer to come in and have tea.

Lillie: Oh, no!

Courtney: And they did not leave me a Book of Mormon, either. [laughs] I felt so bad! So now, occasionally, like, people talk about swords, or people will talk about Mormons, and I’ll say, “Yeah, I accidentally pulled a sword on a couple of Mormons once.” And everyone will be like, “That doesn’t sound like an accident?” I’m like, “No, I promise it was!” I felt so bad. So there you are, listeners. I promised you I’d tell you that story. That was that story.

Courtney: So, shifting gears here a little bit. I want to talk about the queer representation in this book, because we do have an Ace character. And what I actually like to do when I go into books where someone has said there’s going to be queer rep, or there’s Ace rep in particular, I try to go in without knowing who the character is so I can see, like, how soon I’m able to spot it. And I’ll be honest, the first chapter or two, I thought it was going to be Tania, the main character, the way she was being written, but that doesn’t seem to be the case. So tell me a little bit about the Ace character in the story and how you wrote her the way you did, and just…

Lillie: Right. So there are actually two Ace characters, just one does not explicitly say so on the page. But the one who does explicitly say so on the page is Madame de Treville. And when she is telling Tania — I guess this is kind of a spoiler, but not really? But when Madame de Treville is talking about her childhood and upbringing to Tania, and she’s explaining to her how she came to be the head of Tania’s order of the musketeers, Madame de Treville talks about how she wanted to be a musketeer and how she had trained to be a musketeer, but they kind of laughed her away when she tried to apply — which, I mean, is is not the correct term, but let’s just go with it. But she ends up training with an important character in One For All when they were both kids.

Lillie: And Madame de Treville talks to Tania about how her parents allowed this training, this fencing training, because they were hoping that she would end up marrying this other character who is an important character in One For All. And Madame de Treville kind of says, “You know, I’ve never had any interest in any of it — in, you know, getting married; in, you know, being in love and that sense.” And I really wanted to make sure that it was very clear that Madame de Treville was canon AroAce on the page.

Lillie: But also, too, I think that it was really important, also, to show her, like, in this position of power in which she is very fulfilled in her life. Because I think that there’s this misconception that AroAce people, or Ace people in general, aren’t happy with their lives or can’t be fulfilled in their lives. It’s like, Madame de Treville — Madame de Treville is a complex character and she definitely has her flaws, as we all do, but I don’t think anybody could accuse her of being disappointed with her status, with how things have gone about. She is a head of an order of musketeers. She has a very high social standing. She regularly has meetings with the Cardinal, who’s the head advisor to the King. She is living a great life. She’s living her best life.

Courtney: She’s such a cool character! She’s such a cool character, because, yeah, in the early chapters — I mean, you see Tania being very reluctant for the concept of marriage. So those were sort of the, like, “Ooh, is the main character Ace?” But then we get Madame de Treville, and I was like, “I actually really, really like that,” because we don’t get a lot of adult Acespec characters, especially in YA as a genre. Because normally, the focus is all the young adults, it’s the teenagers, it’s the early 20s. And we just need more Ace rep everywhere, but we do disproportionately have very young Ace rep in media. So to see that, you know, this is the adult figure in this book be Ace, I thought was really, really cool.

Courtney: And it wasn’t subtle, which I appreciate. And I’m always a little concerned about that when it comes to historical fiction as well, because, much like with the disability and chronic illness, you don’t have the exact vocabulary to play with either. So it’s like, how are you going to make it transparent to the reader and not leave any room for error or for misreading it? Because when it comes to Ace rep, I find that if there’s even a shadow of a doubt, people will argue it, passionately, that this character is not Ace, and I see that even more so than other queer orientations, I think. So that’s always my concern. So I was really glad to see that. But tell me about the other Ace character.

Lillie: Yeah. So I wrote Aria as Demisexual, as Demi Bi, and it’s not specifically… Like, she doesn’t outright state it on the page, but I tried to show kind of her journey in realizing her attraction to another character — which is a spoiler — in terms of that journey of, she didn’t necessarily know that character very well, and once she got to know them more, she started becoming more attracted to them.

Lillie: And, I mean, there are scenes that I had to cut for word count which, like you said, it’s hard in historical fiction when you don’t necessarily have the same terminology that we do today. But I have pretty much as close as I can get to Aria’s outright stating that she’s Demisexual on the page. And if I ever get to write more books with One For All, I will force that scene into those books.

[Courtney laughs]

Lillie: That will be in there. But that element, to me, was important, too. But it’s just one of those things where, you know, One For All, when I initially wrote it, was well over 120,000 words. And then it got cut down to under 100,000. It went out on submission. Then when we edited it, like, we cut out like another 30,000, wrote another 30,000. So there’s just… so much got cut that I wish could have stayed in, and that was one scene. So I did my best with the space that I was allotted to represent that experience of Aria’s identity. But I hope I get to try it a bit more.

Courtney: That would be excellent. I would love to see more of that too, because Demi rep, we don’t have all that much. And I don’t think I’ve ever seen Demi rep in a historical context before. I’ve read a couple of modern books that have Demisexual representation.

Lillie: I think it’s hard to, in historical fiction. Because especially the way that some characters are written in historical fiction — in terms of, like, women who are like, “I don’t want marriage. I am…” Like, you know, “...think that… you know, I’m not attracted to men. Like, I want to go do my own thing.” And then it’s kind of used as a plot device, where it’s like, well — like you said, it’s like, “Well, are they Demi? Or is this kind of like a…” I don’t know, it’s one of those things in the genre.

Courtney: Or is it rejecting the patriarchy?” [laughs]

Lillie: “Is it rejecting the patriarchy?” And it’s like, I think that that sometimes gets conflated in historical fiction in a really weird way. And that leads to, like you said, not a lot of Demi rep, or at least readers not knowing if there’s Demi rep or not. So, yeah, I think that we need more Demi rep in general, but I think that it would be really nice to see it in more historical fiction as well.

Courtney: Yeah, absolutely. And if you don’t mind my asking — and feel free to not answer if you don’t want, but what compelled you to write this representation for these characters?

Lillie: I think that the big thing for me was I thought it would be kind of ridiculous to have four teenage girls as musketeers and not have at least one of them be LGBTQ+. I mean, just the statistical averages? Like, come on now. I mean, it just — it wouldn’t be possible. And that doesn’t necessarily mean that then they would have to have a relationship that was on the page, but just statistically, like, they would be. There would be at least one.

Courtney: Yeah.

Lillie: So for me, it felt like the only way I could authentically write about the experience of being a teenage girl, but also, you know, authentically write our world how it is. And I realized that’s kind of strange to say, given the fact that it’s set in a fantastical version of 17th century France. But I don’t think that that’s an excuse for not providing representation. And I’ve seen certain authors say that, “Oh, like, I don’t write about certain characters, or certain, you know, characters, certain identities, because they can’t have happy stories, or they can’t have…”

Courtney: Yeah.

Lillie: You know. So I think that just writing people as they existed — because it’s not like LGBTQ people are a new thing.

Courtney: No, of course not!

Lillie: They’ve always been around just the same exact way that chronically ill people aren’t a new thing, like disabled people aren’t a new thing.

Courtney: Yes! It’s a perfect parallel. And people get really weird — straight, able-bodied, usually white people get [laughing] very weird about historical fiction, and especially when it gets into fantasy, people will be like, “Oh, there aren’t any disabled characters in this fantasy world.” Like, why not? Or sometimes you’ll have a fantasy world where everyone is white and they’re like, “Well, that’s just what the world is.” It’s like…

Lillie: I got the most hate tweets in response to somebody who was like, “Oh, quote-tweet with your most controversial fantasy opinion.” And I had just had a really rough day and my tolerance was so low. It was just the final straw. And I quote-tweeted along the lines of, “If your magical world doesn’t have disability, if your fantasy world doesn’t have disability, it’s not magic, it’s eugenics!” [laughs]

Courtney: Yeah. [laughs] Yup. [laughs]

Lillie: Everybody got really mad about that —

Courtney: I bet they did —

Lillie: —not everybody, but a lot of people.

Courtney: — but they shouldn’t have, because that’s correct. That is the right opinion. [laughs]

Lillie: Yeah.

Courtney: Oh my gosh. Well, because we play Dungeons and Dragons — we actually DM for an all-Ace group of friends; it’s very exciting. But several years ago, there was a creator who made the combat wheelchair so that you could have a wheelchair-using character and be able to still move about the world effectively. And the amount of hate and vitriol that this creator got for making this, because everyone was like, “Well, no one would actually be in a wheelchair in D&D because someone’s just going to fix it with magic.” It’s like, even spells have limitations. Are we playing the same game? Like, spells have time limits. Also, what is the spell that’s “cure disability”? We don’t have that spell. And if we’re treating magic like medicine, like, medicine doesn’t cure chronic illness. It doesn’t cure injury. It doesn’t cure disability. And a lot of doctors don’t even do that good at helping manage those things either. [laughs]

Lillie: I always find it so interesting when people go the whole, “Oh, well, magic can cure disability” route. Because, just from a writing perspective, when you develop a magic system, we’re always taught that there has to be a price, there has to be a cost to the magic in order for this magic system to work. Like, what is the cost? Because if everybody can do magic and there are no repercussions, then it’s complete anarchy — which, I mean, is fine, but [laughing] it usually doesn’t create a compelling narrative.

Lillie: And a lot of books that I’ve read with magic systems, the cost, the price, is that characters faint, for instance, or characters get sick, or characters lose their energy. Magic is creating the disability. It’s creating the chronic illness.

[Courtney laughs]

Lillie: How do you say that magic can cure disability, and therefore disability can exist, where magic is creating the disability? It doesn’t make any sense to me. But also, on a side note, Melissa See — I don’t know if you’ve read Melissa See’s books, but Love Letters for Joy just came out. The main character is on the Asexual spectrum and has cerebral palsy, but Melissa also loves D&D and talks a lot about being —

Courtney: Oh, really!

Lillie: Yeah. Yeah. So, highly recommend.

Courtney: Yeah. I haven’t read it yet, but it has been on my list for a very long time. Because I think there’s even a little Ace flag accessory on the cover, if I’m picturing it right.

Lillie: Yes, there is.

Courtney: I know I’ve tweeted about it and retweeted. Because anytime I get, like, a whisper of, like, not only Ace rep, but disabled Ace rep, I’m like, [gasps] “Yes!”

Lillie: Yeah. I remember us, just our little disabled writer group, just bawling our eyes out when we first saw that cover —

Courtney: Aww.

Lillie: — when we saw the little… “This is so beautiful!” But no. Melissa writes really wonderfully, and the representation in those books is great, so.

Courtney: I love that. Yeah, that book has definitely been on my list for a long time, so that might have to be next. Because it was just so interesting where I just happened to read your book One For All sort of back to back with The Reckless Kind by Carly Heath, and both of them hit very weird niches in my life. Because the fencing, and also the dresses — I wear a lot of just historical dresses, also, so — and with the POTS. And then in Carly’s book, it was sort of set in Scandinavia, and they were theater kids, and I am actively learning Swedish and I was also a theater kid. And there was even a moment where they make hair jewelry for each other, and that is what I do for a profession. My main job is making artwork and jewelry out of human hair and studying the history behind it. So when I’m reading these two books back to back, I’m like, “Wow! All these authors [laughs] are just taking very niche corners of my life and finally putting them on the page.”

Lillie: I was a former theater kid too. And that was one of the really frustrating things of many about POTS was, like, I think that you know it made it really difficult and almost impossible for me to do theater, just in terms of the brain fog and memorizing lines. But also, tech week [laughing] is not really feasible.

Courtney: Ugh. You mean hell week? [laughs]

Lillie: Yes. And with the stage lights and having to stand — it’s like, “Just stand in place and just wait there, and we’ll let you know when you can move.” I’m like, “No, I can’t just stand here. I can’t just stand here indefinitely. That’s not going to work for me.”

Courtney: The only time I ever actually fainted on the stage was at the end of a dance number in... We were doing Les Miserables and my dance partner was — I was so grateful — he was so tall, and he was huge and muscular, and he just, like, caught me very gracefully and, like, bride-carried me off stage like it was nothing. [laughing] And it was remarkable, because that could have been very bad otherwise. [laughs]

Lillie: I’ve never fainted on stage. I did get dizzy and trip, also during a dance number, and had to get my ankle wrapped up by a classmate who had EDS, so she just pulled the wrap out of her bag —

Courtney: So she was an expert. [laughs]

Lillie: Yeah, she was just pulling it out and she’s like, “I got this!” [laughs]

Courtney:: “I’ve got you!” Well, yes, beware the contents of the EDS bags. We are prepared for anything. [laughs]

Lillie: That’s fair. I feel like for POTS, everybody’s like, “Why do you have this many water bottles? Why do you have salt tablets? That’s weird.”

Royce: In our bedroom, it is the brace drawer.

Lillie: Brace, that’s a good one.

Courtney: Brace. Oh yeah, we have a brace drawer. I think I have a brace for every joint in my body. Even a couple of years ago, my sacroiliac went out on me, and I was like, “I didn’t even know that was a joint until it went out,” because that was deeply unpleasant. But there’s a brace for that too, [laughs] so I picked up one of those.

Lillie: Yeah. I have an SI joint brace as well, because that is my — I had a very significant injury, back injury, turned out to be an SI joint injury, my sophomore year of college while fencing, and I’ve had chronic pain ever since. But one of the fun things were the SI joints, like, they just move around all the time and, like, yeah, the brace helps a lot.

Courtney: Yeah! That’s a really bad joint to injure. Of all the joints, I think it’s SI, and then — actually, now, as I’m speaking to you, listeners can’t see this, but I’m in a hard collar neck brace today, because a few days ago I subluxed a cervical vertebrae, so one of the vertebrae in my neck went out, and that one is bad. That and the SI joint, probably the two worst ones.

Lillie: Yeah. I think that, you know, it’s interesting because I also think that… in terms of when I was a fencer, I would get injured all the time. And later, we learned, “Oh! You’ve got chronic illnesses. You’ve got POTS. Like, of course you’re injuring yourself. Your body doesn’t — you know, your blood doesn’t flow in the same way that other people does. Like, your muscles don’t heal in the same way.” But I was constantly straining or tearing my quads and my hamstrings. But the one time I injured my glute, I was like, “Wow, you actually need this to stand up! You can’t stand up without this.”

[Courtney laughs]

Lillie: There are certain joints and certain muscles that you just never really think about until you hurt them and then you go —

Courtney: Yeah!

Lillie: — “Oh, this is what is actually keeping me functioning.”

Courtney: Yeah, no, that was… The first time I injured my SI joint, I was like, “I don’t know what’s wrong, but it’s terrible!” [laughs]

Lillie: Yup.

Courtney: And at least knowing that I had EDS by that point, I basically — every time I have a new symptom, I will Google the symptom and then put “EDS,” or I’ll Google the symptom and then put “POTS.” So then I can, instead of just reading a Wikipedia page, which is normally not descriptive enough for me, I can find forums of people who are also diagnosed with these things and talking about it. And that’s how I figured, “Oh, this is a joint, and I think I dislocated it, and there’s a brace for it, so let’s go to the medical store.”

Courtney: Well, is there anything else that you want to make sure that we get to? We’ve covered a lot of ground with POTS and queer rep. Swords.

Lillie: Yeah. No, all your questions were so great, and I love getting to talk about all those things. I think… other than, oh, my “disability representation in YA books or just books in general” spiel. Which is that, if people who are listening, if you are wondering, “Oh, like, you know, first book, first traditionally published YA book by a major publisher with a main character with POTS?” Yes, and it took a really long time not because people aren’t writing those books — that people with POTS aren’t writing those books. It’s because publishing has this weird obsession with the idea that chronically ill and even, really, disabled main characters can’t exist outside of non-contemporary spaces. So if you want more books like One For All, you have to show publishing that you’re invested in the current books that already exist.

Lillie: So that doesn’t mean just supporting One For All. It means supporting books like The Whispering Dark by Kelly Andrew, which has deaf representation, which is kind of a paranormal dark academia. It means represent — and this is when I forget all of my list of books with — because of brain fog. It means supporting… like, for example, the response that I’ve seen to Fourth Wing has been incredible, to me because the main character has EDS and the author does as well, but I haven’t seen a lot of people actually talking about the disability representation in it. They’re just like, “Ahh, dragons! Ahh, fantasy!” Which is great. I’m not saying those things aren’t great. But you have to talk about the disability rep. You have to show publishers and the industry that you are invested in the representation so we get more books by more authors that have more perspectives.

Lillie: Because the fact of the matter is, I am a white woman. And, yes, there’s POTS representation, but the amount of books by disabled BIPOC that have disabled BIPOC main characters, it’s very small. And again, it’s not because those books aren’t being written. It’s because the publishing industry functions the way it does. So we have to support those authors. We have to support these books.

Lillie: And that doesn’t necessarily mean monetarily supporting them. It means doing whatever you can. It could be in a social media post. It can be requesting it at your local library. It could mean suggesting it — if you’re in a book club, it can mean suggesting it to the book club. It could mean recommending it to a school in your area. There are a lot of different ways to support books and to support authors that aren’t necessarily buying their book.

Courtney: Oh, yeah.

Lillie: Buying the book is very nice.

Courtney: Well, I always tell people, if there’s a book you want to read that you maybe can’t afford a pre-order or your bookshelf’s already full, like, request it at your library. I have requested several books at our library and they’ve never told me no. If I’m ever like, “Hey, why doesn’t our library have this book?” They’re like, “We’ll order it for you!” So it’s — most libraries have forms that you can fill out online these days to just say, “This is the book I want.” But if they don’t, drop by, make a call. That’s another great way to support authors.

Lillie: Yeah. Librarians are great. Half of the messages that I get from people with POTS telling me about how much the book meant to them? Half of them, at least, are telling me, “Oh, my librarian recommended this book to me.” So I librarians have been some of the most earliest, most ardent supporters of One For All, and I really cannot thank them enough. They’ve been incredible.

Courtney: Librarians are heroes.

Lillie: Yeah.

Courtney: I’m so sad to see librarians getting attacked for just so much as having queer books on the shelves in some states these days. It’s a really, really nasty situation. Because I think a lot of people take for… that librarians are highly skilled professionals. They aren’t just people that put books back on shelves. Like, they know literature. They know the new books coming out. They know the old books. They know the topics. And I love getting book recommendations from librarians.

Lillie: Yeah.

Courtney: Just telling them some of the things I already like, some of the things about me. Like, you’ll hear from books that you’ve never heard of before if you talk to a librarian, and it’s wonderful.

Lillie: Agreed.

Courtney: So on that note, where can all of our listeners find you? As usual, we’re going to put a link to the book, if you’re interested, in the show notes, so you can pop down there and find it. But we also want to make sure people can find you on social media and whatnot. So give us those links.

Lillie: Yeah. So one of the perks of having the non-traditionally spelled first name of Lillie and my last name of Lainoff is that there’s only been one other Lillie Lainoff in all census records, and she passed away before social media was a thing.

Courtney: Wow!

Lillie: So all my social media is just my name. It’s @LillieLainoff on Twitter, which, who knows if Twitter will be around by the time [laughing] this podcast airs.

Courtney: You know, we’ve been saying that with, I think, every guest we’ve had since last November. Like, “Well, you can find me on Twitter, if it still exists.” [laughs]

Lillie: Yeah. It’s still around. I love Disability Twitter so much. I laugh so I don’t cry, because I love Disability Twitter, and it’s the most accessible social media platform for so many of us, including myself, and the thought of losing it is horrifying. But I’m also on Instagram [laughs] at the same name. And my website is just www.LillieLainoff.com, where you can find more information about the book and also links to One For All sales in the UK and in Spain. The Spanish language edition just came out.

Courtney: Ooh, exciting!

Lillie: Yeah! Very exciting. It’s really cool to see your work in translation. I’ve never had that happen before, so getting to actually see that and hold that book was really special. And yeah, those are the two current social media platforms. Who knows if there will be another social media platform that emerges from the rubble that is the bird site, but we shall see.

Courtney: We shall see. Well, this has been such a pleasure speaking to you today, Lillie. I loved your book. I loved our conversation here today. And I really hope our listeners will go ahead and check out your book, check out your socials. I never know how to end these things.

Lillie: Well, thank you so much for having me!

Courtney: [laughs] Thank you for being here. So, listeners, do pop down to those show notes. Give us whatever… This is what’s hard about podcasts, see? Because YouTubers can be like, “Like, comment and subscribe,” but we’re on, like, Apple and Spotify, and some of them have ratings, and some of them have reviews, and we’re on Twitter, so you can tweet at us. So I’m like, “What do I say?” Just just do the things! You know what you’re on. You know what you need to do. Do them! And we will talk to you all next time. Bye!