Asexual Representation: My Heart To Find is the Acest, most Disabled book I’ve ever read!
May is Lyme Disease Awareness Month, so we’re discussing the Aces in Love Romantic Mystery novel My Heart to Find! Not only does it feature #OwnVoices representation for Lyme Disease and OCD, but there are more Asexual characters in it than any other book we’ve read!
Courtney: At long last, everyone, we have done it: we have found the Acest book. It is at least the Acest book that I have yet read. But, joyously, not only is it the Acest book, it is the Acest, most disabled book that I have indeed read. So I’m very excited to share it with you today. So let’s dive into it.
Courtney: For those of you who may be new here, my name is Courtney. I’m here with my spouse, Royce. And together, we are The Ace Couple. So I thought it was quite fitting that we purchase and review a book which is billed as “An Aces in Love Romantic Mystery.” The book is called My Heart to Find by author Elin Annalise. And the funny thing is, I’m pretty sure this book came on my radar because of the — it might have been the very first Disabled Ace Day that I ran when people were using the hashtag and sharing their own stories. I heard that there is disabled Ace rep in this book, so naturally, we gotta pick that up, we gotta dig into it.
Courtney: But funnily enough, after buying this book and after buying a separate book, it actually kind of came to my attention that I had purchased two books from the same author that were published under different names — like, a pseudonym was used — and I had no idea that there was a connection between them. So we’re talking about this book today, but I have another one that I haven’t gotten around to reading yet, but I believe that one’s called Rhythm of My Soul and that one is like — there’s a ballet dancer on the cover, pointe shoes, tutu, there’s a very strong ballet theme and setting in that book. So naturally, as a ballet dancer myself, as a ballet teacher, I’m really, really excited for that.
Courtney: This one, however, was a topic that I don’t normally like, so I wasn’t sure what to expect. Because as “An Aces in Love Romantic Mystery,” it was very strongly themed around true crime, and I have a lot of issues with true crime. I know a lot of people like true crime. I’ve got a lot of friends myself who are very into true crime.
Royce: Is the issue there that a lot of true crime isn’t really approached in a very moral or ethical manner?
Courtney: Oh yeah, absolutely. And there can be a few different issues with it. For example, I actually have had a conversation with someone who was related to someone who was murdered in a very high-profile case — and this was long ago at this point — but the entire family is still, to this day, just, like, terrified of whatever next podcast or TV series or documentary is going to pick the case back up. Because, of course, the family gets contacted, they get asked for comments, or maybe they don’t — whether they are asked to or whether they choose to participate or not. Like, there’s still a lot of trauma involved.
Courtney: So I find that any crime that has happened within living memory — like, I’m not necessarily talking about, like, Jack the Ripper — even though I don’t always like how that’s handled either — there’s not a lot of consideration about the living family members or the living friends who genuinely new this person, and still have a lot of trauma associated with it. And of course, with, like, Netflix series that borderline glamorize serial killers, and then you get weird fandoms popping up online about how hot a serial killer was, it’s like, there’s just some weird ways that that can be handled sometimes. So I’m always very, very leery of true crime.
Courtney: When it comes to, like, nonfiction true crime, I just stay away from it for that reason. But I was like, “This is a fiction book.” This might be the only way that I could, with my own set of values, [laughing] enjoy true crime, you know? So I was very curious to see what that experience was like for me.
Courtney: But I’ll go ahead. I’ll read the summary on the back here so you have a primer on the background, the setting, the plot, and then we’ll get into as much as I think is relevant about the actual content and how Asexuality is handled in the book, how the disability is handled in the book. I’m always so torn when we do book reviews, because part of me wants to talk about, like, every single passage that I thought was handled really well and why I liked it, or if there was a reason why I didn’t like it. But I also want to leave enough [laughing] for people to read themselves if they want to, so we’ll see if we find the balance or not [laughs].
Royce: And of course, you can always just abandon the podcast episode, go pick up the book, read it, and come back when you’re done.
Courtney: You could. You could do that. We will put links in the show notes for where you can get this book and others by the author. Because this is, in fact — even if you decide that you’re a true crime hater like me [laughs], there are two other “Aces in Love” books — at least advertised on the back; I don’t know, maybe there are more by this point.
Royce: Can you call it “true crime” in a fiction book?
Royce: Is it “fake crime” or is it —
Courtney: “Fake crime.”
Royce: It’s true crime within a fictional world.
Courtney: Fake true crime. [laughs] But the other two books that are advertised on the back cover here are In My Dreams and It’s Always Been You, but those are both billed as “An Aces in Love Romantic Comedy.” So if rom-coms are up your alley, might want to check those out. I might check those out at some point, honestly. My TBR list is, like, 80 miles long at this point, but you know, I’m an avid reader. [laughs]
Royce: What’s the “B” in TBR stand for?
Royce: Okay, what does the “TBR” in TBR stand for?
Courtney: [laughs] It’s “To Be Read.”
Courtney: [laughs] What did you think it was?
Royce: The only thing I could think of was “To Binge Read.”
Courtney: [laughing] “To Binge Read”! My “To Binge Read” list. [laughs]
Royce: I figured the “R” was “Read.”
Royce: I figured the “T” was “To.” I just couldn’t figure out the “B.”
Courtney: [laughs] Fair enough.
Courtney: “Avid crime-fiction-reader Cara Tate is twenty-five years old, shy, Asexual, and desperate to find love. But there’s a problem: Cara’s chronic Lyme disease has caused brain inflammation and OCD that makes her afraid of anyone touching her. Plus, finding other Aces isn’t easy — especially when there’s no guarantee of a connection. But there is one man Cara knows who is Ace and whom she feels something for. One man who she might just be able to hug… or more. If she can summon the courage to defy the control of her OCD.”
Courtney: “Three years ago, when Cara was healthy, she and her Ace best friend Jana went on a retreat for those on the Asexual spectrum. There, she met professional dog-walker and true-crime-fanatic Damien Noelle — the only man she’s ever felt a connection with. But she was too nervous to stay in contact with Damien after the retreat and has spent the last three years strongly regretting it.”
Courtney: “So when Fate has her path cross with Damien once more, and they have the chance to investigate a real-life crime together, Cara’s determined to overcome her shyness and OCD and let him know she’s more than interested. The only problem is Damien seems interested in Jana now, and the last thing Cara wants to do is ruin her friend’s happiness. For the last few months, Jana’s been dealing with the boss from hell, and Cara knows Damien could be the best thing Jana’s had all year. She can’t take that away from her best friend… can she?”
Courtney: “My Heart to Find is an Own Voices story for Asexuality and chronic illness representation,” the chronic illness being “Lyme Disease and Encephalitis-induced OCD, also known as PANS,” P-A-N-S.
Courtney: So I was immediately really excited about this, because I do have a friend with Lyme disease, and I myself have OCD, but I knew very little about Encephalitis-induced OCD.
Royce: This is the first I’ve heard of it.
Courtney: So you’re going to learn something new today. This is also not set in the U.S.
Royce: Is it set in another area of our real world or in a fictional area?
Courtney: No, it’s a very realistic [laughs] book. It’s in the UK. So it’s… part of this chronic illness representation is also dealing with the NHS, which I found interesting, because I have friends who have told me their own stories about the NHS, but none with this particular set of things. So that was very interesting to find out.
Courtney: Because, you know, in the U.S., it’s really easy for us to be like, you know, “Anyone who has universal health care has it a lot better than us.” And sometimes that can be true, but there are definitely issues with rarer things, under-diagnosed things, or just skeptical doctors who don’t know enough about a certain condition, and so it was really nice to read about that own set of experiences.
Courtney: But also just the fact that there are so many Aces in this book. Most of the books with Asexual representation that I have read have had, like, one Ace character. And sometimes it is the main character, but it’s like one Ace character in a sea of Allos — and sometimes that happens in real life, but Ace communities do exist, and there are groups of friends who are predominantly, if not exclusively, Asexual. And it’s just kind of nice! Because we have gotten some representation in the media that does have, like, queer friend groups — most of the cast is queer in some way — but I honestly think this is the first time I’ve seen this for Aces. Can you think of any?
Royce: Nothing’s coming to mind, no. It’s usually one or two Ace characters, and so you don’t really see the contrast, within a single setting, of multiple people in different places of the Asexual spectrum.
Courtney: Oh, yes, absolutely. And that is what we do get in this book. We get characters in different places of the spectrum and a pretty thorough explanation of what that means for each character, which is lovely. For that matter, for that matter, I don’t even know if there are any other instances of two romantically-inclined Aces forming a relationship. Because we had two AroAces in Koisenu Futari. We’ve had some instances where it’s an Ace-Allo mixed-orientation relationship, like in…
Royce: Everything’s Going to Be Okay, Heartbreak High.
Courtney: Yeah. And even other books. Like, we previously reviewed Never Been Kissed; that had a Demisexual character who is in a mixed-orientation relationship. We’ve discussed Let’s Talk About Love by Claire Kann; mixed-orientation relationship. So that’s kind of weird, huh? I mean, it’s great. We are, in fact, two Aces who are in love, but I have not seen a lot of other Aces who are in love. So, we love to see it.
Courtney: So, the book opens. And each chapter is kind of jumping perspectives. So the first chapter is by Cara’s perspective. And she’s at a bar with her friend Jana, which is not an ideal environment for her, [laughing] especially given the OCD. But she meets some guy, and he asks to step outside. And she agrees to go outside, but he steps closer to her in a very particular way, and she’s like, “Uh, what are you doing?” And he gives a strange look, like, “How are we gonna hook up if we stay 10 feet apart?”
Courtney: And so she steps back and outright says, “I’m not having sex with you.” He gets angry. It says, “Rob’s eyes narrow. ‘You’ve been leading me on?’ Leading him on? What the hell? I hadn’t even danced with him or even met him five minutes ago.” And then in italicized font, it says, “But you did agree to come out here with him.” And I thought that was a nice touch, because it can be very easy to blame yourself in a situation like that — even though agreeing to step outside with someone is not consenting to sexual activity with them, despite what creeps at the bar think. But I’ve absolutely been in similar such situations, and the italics here, I think, really show the self-doubt. It can also really show, like, an intrusive thought that can come through, especially in high-stress situations like this.
Courtney: So, despite being outright and very explicitly told “No,” this guy continues to press on and says, “‘Ah, you can have a bit of fun.’ He says, ‘Come on, we’re both attracted to each other. You wouldn’t have come out here with me otherwise.’” And it proceeds, “I am not attracted to him. Not at all, and especially not sexually. But there’s no way I’m telling him that — or that I’m Ace. He could flip out on me. It’s happened before. I’ve got to put my safety first.” I really like that. I think there are a lot of Aces who have been in situations like this.
Courtney: But truthfully, safety when engaging in… well, either with strangers or in a new relationship or a mixed-orientation relationship as an Ace person — I think is something we don’t really talk about enough as a community, especially given recent studies that have come out saying that Aces are at a high risk of experiencing intimate partner violence. And so I just… [laughing slightly] I liked the acknowledgement of that in the book. I don’t see an acknowledgement of that very often.
Courtney: But once she’s able to get herself out of that situation, pulling onto a different scene, Cara sees Damien. “My palms are sweating, and suddenly it’s like I’m back there, three years ago in Mallorca, on the retreat for those on the Asexual spectrum, watching Damien Noelle make eye contact with me from across the room — eye contact that makes me giddy because he’s hot.”
Courtney: It talks a bit about how Jana, who is also on the retreat — how she’s not really sure if Jana would remember Damien because most of the time at Mallorca, she was with another guy who, it says, “is Graysexual like her.” I thought that was a nice subtle way to explain where she lies on the spectrum. But then it also says that once she broke up with him — I believe just because they were long distance and it wasn’t working for them — she ended up meeting, quote, “A straight guy who told her he was fine with her being on the Ace spectrum, but he wasn’t.” And all I can say is I also know the type.
Courtney: So the next chapter is by Damien’s perspective, and it is essentially all a flashback, a memory, to that retreat. And so, we’re seeing what he sees. And they sort of go around and do the sort of introductions, like, “Oh, tell everyone about yourself” kind of a thing. And the way Damien introduces himself: he says, “So, I’m probably Demisexual. I mean, I think I am Demi.” And then he… the panic starts to creep in, and he says, “I mean, I think so? Like, that’s probably the word that best describes me, though sometimes I think Gray might be better, but then I get all worried that I’ve been using the wrong one, even if Demi does seem right at times.”
Courtney: And what I think is so unique about this — aside from the fact that that is very accurate to a lot of people’s experience; there are many people on the Ace spectrum that sort of have that panic and worry and don’t really know what word is right for them. But he does know that he’s Ace, and he does know that he belongs at this place, so that much has been cleared up. He’s just not sure where on the spectrum he lies. And most of the time, the identity conflicts in Ace representation are just finding out that you’re Asexual. Like, you don’t know that you are, and then here’s your journey towards figuring it out. So this is just a little bit different and a little more nuanced, but also something I’m sure lots of people can relate to.
Courtney: As they go around the table, there are a couple other people that sort of introduce themselves and their place on the spectrum. And so, this is clearly, like, the storytelling device for explaining other areas on the spectrum, even the ones that aren’t prominent characters here. Like, there’s especially a nod to Aromanticism, even though the main story here is, you know, “An Aces in Love”; they’re romantic Aces. So there are sort of conversations. Like, there’s an Aromantic and Graysexual person, and someone who’s kind of new to all this and a little bit maybe exclusionary and hasn’t learned about the nuances of the spectrum yet, sort of takes a jab and is like, “Well, why are you at a dating retreat if you’re Aromantic?” So they explain that, you know, some Aromantics do still want partners.
Courtney: And then he remembers Cara introducing herself. And she says, “I’m Ace and romantic.” And then he’s thinking about her later, and he’s like, “She said she was Ace and romantic, but she didn’t specify who she’s romantically attracted to.” And then he’s like, “Oh, I guess I didn’t specify either. [laughing] I didn’t say that I’m hetero Demisexual,” and sort of almost, like, kicking himself because she caught his eye, you know?
Courtney: There are some chapters in here also by the friend, Jana’s, perspective. I didn’t take nearly as many notes on some of her chapters.
Royce: Does the entire book rotate between those three perspectives?
Courtney: It was just rotating between those three. And I did take some notes on some other Jana chapters later, but some of the earlier ones didn’t have anything noteworthy for the sake of the podcast yet — I think especially ’cause earlier on I was so excited to get into the disability intersection. I think it was a neat choice to have the type of OCD where physical contact is an issue — which is different from my type of OCD, by the way, so I can’t relate to that particular symptom. But to also have the fact that this is Encephalitis-induced, so it came as a result of the Lyme disease, and that this Asexual dating Retreat from three years ago was before this chronic illness developed.
Courtney: So I don’t know how much of that is actually the author’s experience, if the author also came to realize Asexual identity before getting sick, or if that was just the best way to tell this particular story. Not that I would think that the character would be any less able to claim the identity of Asexual if they didn’t find it until after this developed. But I imagine that is a helpful timeline for people who might be picking this up who don’t know as much about Asexuality as we do.
Courtney: But here’s one thing that I underlined because I actually have a question. So if we have any U.K. listeners out there who are particularly knowledgeable about this, please comment if you’re listening on YouTube or tweet at us or something [laughs]. Because Cara says, “I’m not allowed to drive because of the fainting, and how far I can walk without becoming ill varies by day.” And I can relate to that, except for the fact that I’ve never been disallowed from driving because of my fainting spells. I’ve never fainted while behind the wheel. That’s good. And I know there are some other diagnoses, like types of epilepsy, other things that can actually, here in the States, disqualify someone from getting a driver’s license. But I’ve never heard that here for fainting.
Royce: I haven’t either. And I’ve never thought to look up the laws myself, but it seems like it is pretty difficult to get a license revoked over here.
Courtney: Yeah. That could be. And the question I had, I guess, namely was: is this just a difference in policy between two different countries, or is it a unique feature of the fainting brought on by this particular illness? Does the fainting come more often while sitting down? There could be any number of things. So I don’t know if it’s the condition or the country. [laughs] But either way, I thought that was interesting. It’s curious. It got me questioning.
Courtney: Although I will say, it’s probably not too much to do just with the condition, because it brings up fainting first, but it does actually mention POTS later, as, I guess, a co-occurring condition with these other things — which stands for postural orthostatic tachycardia syndrome, which is also something I have! So I can actually relate to that type of fainting. But, yeah, POTS and brain fog are things that I 100% can relate to. I don’t actually lose consciousness nearly as much as I used to, but, especially when I was a teenager, I was outright losing consciousness, falling on the ground fainting several times a week [laughing] for certain periods of time. And I was just driving like normal. I was driving every single day. No one even thought to take away my license or not let me get one.
Courtney: I do really like having an Ace character with POTS. There is another book, which maybe we’ll do an episode on at some point — I read this a while ago — called One For All, which has a main character with POTS who’s a fencer, and I also used to be a fencer. So I was like, “I was a fencer with POTS! Let’s read this book!” And there was an Ace character — arguably two — in that book, who were not the main character, with that condition. We might actually have enough to talk about to make that an episode. We’ll see. Let us know if you want to hear about that one.
Courtney: I can really tell that in all aspects, the author was really caring about the spectrums and the various manifestations of certain conditions. Because not only do we have a whole bunch of Ace characters in different places on the spectrum, but we have Cara being the only one in this Ace group of people who has a chronic illness, so she has sort of a secondary support system for her Lyme disease.
Courtney: So she has another friend named Raymond, and he’s a Black man with Lyme disease who it says “makes his fingers inflamed, which doesn’t help his juvenile arthritis.” So Lyme is one of those goofy, really difficult to pin down kind of a — I think it’s technically a virus. And I don’t think I’ve seen a lot of accurate Lyme disease representations in media either. Because honestly, now, as I’m trying to think of it, I think the only one kind of, maybe, sorta, that I’ve ever seen was Joan of Arcadia. Royce, did I make you watch Joan of Arcadia with me? I know I watched it, like, years ago, while it was still on TV, but I feel like I’ve re-watched it within the last 10 years. [laughs]
Royce: I’ve heard you mention it. I don’t think I watched it. I can’t remember if you watched it, re-watched it around here or not.
Courtney: I feel like maybe I did. [laughing] Joan of Arcadia was such a weird one. Because the entire premise is that God appears before this girl named Joan and gives her sort of cryptic jobs to do that aren’t immediately obvious, like, why she needs to do them. He’ll be like, “Join the chess team. Just do it.” And she’ll be like, “But why? Why do I have to join the chess team?” And then by the end of the episode, you find some reason why she was in the place she was at that time — to help someone out or what have you. But every time God appears, he looks different. Like, he’s a different person, a different age, a different gender, a different, you know, clothing presentation. I’m personally fond of goth God. There was a goth God. [laughs]
Courtney: But season finale of season one was super weird. Because it’s, like, the last day of school or something and this really awful teacher — maybe he’s the principal — type character, she starts seeing, like, devilish eyes in him. And she’s talking to God and she’s like, “Is he the devil?” And she’s seeing all these different manifestations of God, and she ends up passing out. And then she wakes up in the hospital, and they’re like, “Oh, she has Lyme disease. She could have had it for months, and it can cause all these other things, and it can cause hallucinations.” And when they come in to tell her that she’s been sick with Lyme disease for, you know, potentially as long as she’s been seeing God, she, like, breaks down and starts crying and is like, “It wasn’t real. It was all just a hallucination.” And so, then there’s this big question of, like, “Is she really seeing God or is it the Lyme disease?” [laughs]
Royce: Which, by the way, Lyme disease is not a virus. It is a bacteria —
Royce: — spread by ticks.
Courtney: Thank you. I knew it was spread by ticks. That much I did know. Because that was always — even before I ever knew somebody who had Lyme, I was aware of it. Like, going camping and, you know, searching for ticks, or if I had a tick at any point, it was always like, “Ugh, be careful, you can get Lyme disease from them.” And I was sort of taught during, like, camping and scouting things, like, how to identify the… what do they call it? A bull’s-eye rash?
Royce: I don’t know.
Courtney: You don’t know? I assumed you had information about it up in front of you. [laughs]
Royce: I did, but I hadn’t seen that.
Royce: I was also just generally told to be wary of ticks but not given a lot of useful information on that.
Royce: Aside from just, you know, “Try to wear clothing in a certain way where you don’t expose your skin if you’re going to be out somewhere. If you see a tick on you, get it off as quick as you can, and here are methods to get a tick out if they’re actually, like, attached.”
Royce: That kind of thing.
Courtney: Yeah. Well — and this might be the reason why I had “virus” in my head, was because one of the issues with the NHS that comes up with this is that — oh, I guess antibiotics was something that was talked about, so I should have known that. But once, like, the course of antibiotics was taken and everything, there were doctors that are just like, “You’re cured. It’s gone. Like, you don’t have Lyme disease in your system anymore.” But this is, like, chronic Lyme disease. This is lingering symptoms. This is comorbid conditions, like the OCD and like the POTS. And very often with my own set of illnesses and that of many of my friends, things like POTS developing is very often associated with, like, lingering chronic conditions that develop after a virus, but it doesn’t need to be that specifically. But we’ve been hearing things like that even with Long COVID.
Courtney: And I’m sure Lyme disease, just as a concept, like most illnesses, has definitely gotten more information and more research over the years and more awareness. But it seems to just not be there yet. [laughs] If there are doctors who are not acknowledging that chronic Lyme disease can be a thing or that there can be continuing issues. Which, as I said, I do have a friend who… Actually, I have a U.S. friend and a Canadian friend who each have Lyme disease — chronic Lyme. So I very much know that it is a real thing.
Courtney: And I don’t know, Lyme disease just kind of seems — like, aside from Joan of Arcadia [laughs] and maybe, like, the one-off episode of doctor shows and doctor dramas — like, I don’t know for certain that there was a House episode where Lyme was the answer, but probably. Even before House was, like, ER. I don’t know if there was an ER episode about it, but things of that nature. So we don’t normally get such a nuanced portrayal of this either.
Courtney: So while Cara’s talking to Raymond, of course they, you know, just discuss their lives a bit. And she mentions Damien, and he’s like, “Oh, Damien, as in [emphasizing] that Damien?” [laughs] So he knows about Damien. And he sort of says, like, “Yeah, why don’t you pursue this?” And she has, you know, that little thought in the back of her head saying that it’s too complicated.
Courtney: And this passage here says, “It’s not like I could have a relationship with him now or anything, and just the thought of it — of having to cuddle someone and more, because he’ll still want to kiss, won’t he? Even though we both identify as Ace, it doesn’t mean we’re both never going to touch, if something were to happen between us. Asexuality is a spectrum and includes a whole host of different identities. A lot of Aces kiss and touch and some have sex. I think of Jana. She’s Gray Ace and she’s told me she does like sex, she just doesn’t feel sexual attraction that often, and when she does it’s low-intensity. ‘I’m sort of halfway between being Ace and Allo,’ she said once, ‘or maybe I’m closer to the Ace end. I don’t know.’ All I’d known when she talked about it was that I was definitely not Gray Ace. I’ve never actually felt sexual attraction, and now with the added bonus of my OCD and contamination fears, the idea of doing anything at all makes my stomach twist. I can’t even hug people platonically.”
Courtney: So we now have not only sex-aversion but touch-aversion that has a medical reason. And that’s an interesting and a nice twist on the usual, “Oh, I’m Ace and he’s Allo, and oh, no, what if he wants to have sex because he’s not Ace like me?” So it’s just showing a different type of issue between two Aces, exacerbated by chronic illness.
Courtney: And we get some little nuggets of Raymond’s life as well. Raymond has been ill with Lyme longer than Cara has. So Cara recalls when Raymond was frequently calling her in anxiety when he became attracted to someone named Ali, where it says, “The first time Raymond told me he’d been able to hold Ali’s hand without freaking out, he’d had the biggest grin on his face. Then he told me about the first hug, the first kiss, and more — until I stop him, telling him I didn’t want to know all the details. But he says that Ali’s the only one he can touch now without panicking.”
Courtney: And we get some little more nuggets, just in the day-to-day goings-on of Cara. She mentions that Lyme is a very unreliable illness. There are good days and bad days, so it’s very difficult to plan ahead. [laughs] Very relatable. Some days are just worse than others. She mentions having coat hanger pain. Is that something — is that a term you’re familiar with, Royce?
Royce: I haven’t heard that one, no.
Courtney: If you can picture, like, the shape of a coat hanger and put it, like, on your back — like, neck, shoulders, like, if someone were to hold a coat hanger up to that, that sort of area — like, shoulder, back, neck, and having issues with flare-ups in the joints, causing pain. This passage: “My NHS GP could never explain that pain, but my private doctor, Dr. Singh” — actually, she calls Dr. Singh “the savior” — “was able to account for it after a quick lot of tests. ‘Joint pain is common in chronic Lyme,’ he’d said, ‘particularly the big major joints: knees, shoulders, hips. Lyme arthritis: the bacteria gets inside the joints, invades them. You get swelling in the joints, a lot of pain, because the lining of the joints is being eaten away by the bacteria.’ Bacteria from the Lyme that the NHS doctors swore I couldn’t possibly have anymore because they don’t believe that chronic Lyme disease exists. Ha! To them, I’m just a hypochondriac.”
Courtney: See, I just needed to read my notes a little further [laughing] before I went and said “virus.” That was so silly. I did — I will say, I read this, I think, well over a year ago, and we have a few different books that are already read and ready to do a podcast on that are just sitting in, like, our podcast pile. [laughs] So we’re slowly getting through them. We’re chipping them away. I think I just went through… well, this is why you thought TBR meant “To Binge Read.” Because I binge-read a whole bunch of books all at once, made a bunch of notes on them, and then we couldn’t possibly record all of those episodes [laughing] as fast as I was reading them for a short period of time. So, some of this, I’m refreshing my own memory as we’re going along.
Courtney: So that being an interesting feature of the NHS. Because I know some of my friends who don’t necessarily have as complicated or as chronic of issues that have to deal with the NHS still have, you know, bad doctors here and there, bad specialists, long wait times, whatever particular issue they have at the time. But I don’t know a whole lot of people who have sought help from private doctors or private practices who live in that area. I’m sure it is probably extraordinarily expensive. [laughs]
Courtney: I have also needed to do our U.S. version of that at certain points, because… well, our private insurance program is crap. [laughs] It doesn’t cover nearly everything, especially not with all of my weird, difficult to diagnose or difficult to treat things that I have. So in some cases, it’s like, well, even if I go to these doctors, insurance won’t pay for it. Or if they do pay for some of it, I’m not going to get the treatment I need. So sometimes, it actually is the better option for me to find a practice that doesn’t accept insurance at all and they pay exclusively out-of-pocket. It gets really really expensive, but they also then aren’t beholden to the rules of the insurance company. Because there are even doctors here who get frustrated, who will say, like, “I can’t prescribe you this medication until I prove that you’ve tried this medication first and it didn’t work.” Or “We need to do this test before we can do that one.” Or even just having a prescription just, like, outright denied because the insurance company’s system just decided, “Oh, you don’t need that. [laughs] So we’re not going to pay for it, despite what your doctors said!” Ugh. Healthcare’s such a racket. [laughs]
Courtney: And I mean, like, despite it being a racket [laughs] and despite even other countries who do have some type of universal health care, also having their own issues, I do think it’s better to have universal healthcare than not. Because if private doctors are still an extraordinarily expensive option either way, I feel like we might as well have at least all of our general care taken care of [laughs] and all of the easier, more basic things that are sufficient for the average person. It’s just so frustrating. I want people to have access to the help that they need.
Courtney: I won’t read this entire passage, but I did like sort of the memory of how she got Lyme, when she did have a tick bite, when she did go to the ER, when her doctors begrudgingly gave a course of antibiotics thinking that it’s really rare and probably won’t be an issue anyway, and then the progression of getting sick and getting sicker and getting more and more symptoms and what that was like, and what ultimately led to internet searches of symptoms and kept finding Lyme disease time and time again, which is also very relatable. So many people with chronic illnesses have to become experts in their own conditions because the doctors won’t. They just don’t put in the work. They don’t put in the research.
Courtney: But one thing I did find interesting was aside from just the NHS doctors not being able to give suitable help and needing to seek a private doctor, the lab tests that need to be done had said that the labs were sent to Germany and the U.S., and that it was actually a panel that was sent to Oklahoma to test [laughs] that came back with information. Which is just so weird, how all of that happens, because, like, we’re so close to Oklahoma. [laughs]
Royce: Yeah, and a lot of this pathology is just interesting from what I’m looking at. Because I clearly haven’t done enough reading just now to fully understand this, but the language being used in this book is “chronic Lyme,” is that correct?
Courtney: It mostly just says “Lyme” or “Lyme disease.”
Courtney: But chronic Lyme is mentioned in so much as that is what the private doctor came up with. And the private doctor said that Encephalitis can be caused by chronic Lyme disease, and these tests were to prove chronic Lyme.
Royce: Gotcha. I see.
Courtney: Which —
Royce: This may just be a matter of differences in terminology, but I’m seeing a lot of “chronic Lyme” — like, specifically the words “chronic Lyme” — coming up under things that there are a lot of skeptics towards and pointing towards a 2008 documentary that a lot of people are saying pushed false information.
Royce: But at the same time, there is something called post-treatment Lyme disease syndrome or PTLDS, which is seen as… like, the medical community is behind that, and I can’t tell the difference between the two.
Courtney: Is it weird that when you said “PTLDS”, my brain immediately went, “Post-Traumatic Latter Day Saints”? [laughs]
Royce: That’s a different diagnosis.
Courtney: Oh no! [laughs] Where do you have to send the labs for that? [laughs]
Royce: Utah, I assume.
Courtney: [laughs] Royce, you’re killing me. It is just so weird how different countries have different policies, how different medical systems are conducive to different types of tests and things. Because whereas this person in the U.K. had to send labs to Oklahoma, which is right in our backyard, essentially, but then I’ve been looking up symptoms that have developed with me over the last couple of years that if they get progressively worse, I could need a… honestly pretty scary surgery. [laughing slightly] Like, I was kind of freaked out learning about this. And I actually was connected to a Swedish woman who had this same thing and had this procedure done. So I was looking into her journey and getting information.
Courtney: But even just to test for this, it needs a very specific type of equipment that, for some reason, we just don’t have in Kansas City. And it looked like maybe I could get diagnosed in St. Louis, but even if I got diagnosed there, it was like, the people who can do this surgery are probably going to be in the U.K. or… I think Spain was the other one. It was, like, two different European countries. And I was like, “Well, that sounds terrifying.” [laughs] Going that far overseas to get a… apparently complicated, if more doctors don’t do it, operation, like, on my neck. So that was — it’s just so weird how that works. I know lots of people need to go to other countries to seek certain types of treatment, but it all just seems so disjointed.
Courtney: And I think what really helps give a wider variety of perspectives here is not only the characters in different places on the spectrum, not only the way that it rotates perspectives, but also that it’s sort of jumping timelines, because some of these are flashbacks or memories and some of them are what’s actively happening right now. Like this chapter from Damien’s perspective, for example, was talking about how great of an experience Mallorca was. He said, “It had given me hope that even though I’m Ace, I could find someone that I work with romantically, someone who wouldn’t want the slightest touch to lead to sex all the time. Because that’s the experience I’d had before. My last and only relationship, I was 21, and I’d got involved with this woman I thought was amazing. Things were great. We clicked and hit it off. I wanted to spend all my time with her. Until she was no longer satisfied with just kissing or just cuddling. Until everything became about sex — or rather, about why we weren’t doing it as often as she wanted.”
Courtney: “‘What are you, gay?’ she screamed at me once. ‘You’re supposed to want me. You’re a man. Be a man.’ ‘That’s not fair!’ I shouted back. ‘You know about my sexuality.’ ‘You said you were Demisexual.’ She had tears in her eyes. ‘You said you’d be sexually attracted to me once we formed a close connection. And we have, haven’t we?’ ‘Yes. But—’ ‘So why aren’t we doing it all the time, then? Seriously, it’s been months, Damien. Months. Is it me? Is it just that you don’t want to sleep with me? Is it me? Am I repulsive?’ Her eyes widened. ‘Is there something else?’ ‘No.’ ‘Then it has to be me. You’re not attracted to me.’ ‘I am! I am!’ I cried. ‘It’s just…’”
Courtney: “It was just sometimes I did want to have sex, really felt that attraction, and I was sexually attracted to her — the only person I had been attracted to like that. And we did have sex those times, and when we did, it was amazing. But most of the time I didn’t feel like that. I didn’t feel that attraction. Maybe ‘Demisexual’ was the wrong label for me to use, because doesn’t that mean you’re going to want to sleep with your partner all the time? Or maybe I got that wrong? I’m still not sure. And I’ve never really been brave enough to talk about it to other people. I just find Aceness confusing. Even, especially, my own Aceness.”
Courtney: So we get that issue, which is a continuation of the previous mention where he’s kind of concerned about vocabulary, and maybe some of that issue stems from this relationship, because the word he used that felt right at that time gave someone else the wrong impression, and that can lead to a bit of, like, Ace impostor syndrome or a lot of confusion and hurt. But I don’t think there’s any orientation or microlabel or specific place on a spectrum that should ever give someone a 100% definitive idea of what this person’s sexual proclivities are all of the time. ’Cause everything is just way more nuanced than that. And once you get to a point of having a relationship with someone, that just needs to be conversations on a personal level.
Royce: Yeah, that’s not true for allo people or for straight people either.
Royce: Like, different people have different proclivities or different drives or interests or…
Royce: It all comes down to communication.
Courtney: Yes. And so then we sort of have a parallel with Jana as well, who we’d already gotten a hint that her current boyfriend is not as okay with her being Ace as he said. So they have a falling out. They go to break up and he says, “Oh, but we were good together,” and she says, “We were good together? Do you actually believe that? You lied to me, Max!” And he’s like, “Lied?”
Courtney: “‘Saying you were okay with me being Ace.’ ‘You did say you were Gray Ace.’ ‘Gray Ace is still part of the Asexual spectrum.’ I lower my voice. ‘And you know I’m closer to the Ace end than not.’ ‘Look, we can work something out,’ he says pleadingly. ‘It’s all about compromise. And I know you love sex, really. It’s just a phase you’re going through, pretending to be Ace.’ He mouths the word. ‘A phase?’ I stare at him. ‘Really? Is that what you’re going with?’ ‘Jana, please! Is it just because of that time when—’ ‘It’s because I’m Asexual and you’re not respectful at all of my sexuality. We’re not getting back together.’ I say. ‘End of.’”
Courtney: So I love that she finally puts her foot down. And I just love reading about issues of people who are in the Demi or Gray area of the spectrum also having issues in mixed-orientation relationships. Because I think too many people who don’t have that experience think, like, “Oh, well, if you’re Demi or Gray, then that’s fine. You can still essentially be an Allo after the necessary prerequisites have been struck.” And it’s just not always like that. There’s still unique considerations for people who are in that place on the spectrum.
Courtney: So then we have some more experiences interspersed with specific chronic illness considerations. Like friend Raymond, for example, talking to Cara is like, “It’s really hard to be chronically ill and a guy.” And she’s like, “Uh, it’s hard to be chronically ill no matter what your gender is.” And he’s like, “Well, yeah, you’re right. But I am a big Black guy. People do not expect me to be weak and sick. They expect me to be, you know, big and tough and strong. And there are extra barriers to being believed there.”
Courtney: And then from Cara’s perspective, as a woman, there is a horrible doctor that she sees that’s basically like, “You’re not actually physically sick, because your NHS blood test was clear. You don’t have Lyme anymore.” And she says, “But antibiotics improve my OCD and my physical symptoms. So, explain that, doctor!” And this absolute jerkwad of a doctor is like, “Oh, that’s probably placebo effect, and anything you’re experiencing must be psychosomatic.” And he really goes here, “Tell me, Cara. Have you had any bad relationships?”
Courtney: “‘Bad relationships?’ I stare at him. ‘How on Earth is this relevant?’ ‘A recent breakup can lead to feelings such as this. She pretends to be unwell in order to get sympathy.’ He gives my mom a knowing look. ‘I’ve never had a relationship,’ I say. Dr. Fallon’s eyes light up. ‘Never?’ He glances at Mom. ‘Well, well, well.’ Dr. Fallon chuckles in a sad, sad way. ‘This is exactly it. You are scared of sexual relations. And so you’re trying to make yourself as unappealing as possible to potential sexual or romantic partners so you just don’t have to face your fears.’ ‘I’m sorry, what?’ I nearly explode. And wow, I didn’t even mention being Ace. If I had, I can’t imagine what Dr. Know-it-all would have said about that, because of course, he’d have an opinion on it, and probably a very offensive one.”
Courtney: Yeah, can confirm. [laughs] I was a lot younger at the time, but I have had medical professionals make awful comments about, you know, attraction and relationships, and it really does not lead to a lot of trust in order to even say, [laughs] to even declare to a doctor what your orientation actually is.
Courtney: And there are a lot of just lines or scenes in this book that I think are very relatable to me, but also would be very relatable to a lot of people on the Ace spectrum. Like this now ex-boyfriend Max finds Jana, and she’s about to go out, so she’s, like, wearing a dress and heels and is, you know, ready to party. And at which point he says, “You’re not Asexual. Not when you’re dressed like that. Obviously on the pull. Why else would you have your tits out?” And then when she turns him away, he calls her a skank.
Courtney: And then probably, you know, remembering what that awful doctor had said at one point, when Cara does start opening up more to Damien, after their relationship has progressed a bit, she ends up getting to a point where she can touch his hand. And then she’s almost, like, guilty or angry about it, because she says, “And oh my God, this is that stereotype, that chronic illness has a cure and it’s a man! Shame fills me. It has to just be a coincidence, doesn’t it? Or the distraction? But I can already feel the eye rolls of feminists, as if someone they all know what I’ve just realized about myself. I take a deep breath. Then, I think of what Raymond said about Ali, how she seemed to lessen his OCD too. ‘Yes,’ I say, holding his hand. ‘This is okay.’ And it does feel okay. That’s what I don’t understand. I need to look this up. [laughs] Because I’ve heard that romantic love causes neural changes in the brain, that the love hormone it releases can actually physically affect the brain. Could that be what’s helping my OCD? Is my romantic love for Damien reducing my brain inflammation?” I just like “I need to look this up.” [laughs]
Royce: “BRB, gotta Google something.”
Courtney: “Just gotta Google something real quick.” [laughs] Because it’s not enough to just feel what you’re feeling. I must psychoanalyze myself. [laughing] I must understand the scientific reason for why I am the way that I am. [laughs] We, too, are chronic Googlers.
Courtney: There’s a nod to an Ace ring. At one point, Damien’s like, “As we walk, I look down and twist my ring. It’s a black band on the middle finger of my right hand.” And it’s interesting, because there’s actually a Bi character who’s like, “Oh, is that an Ace ring?” And he’s like, “Whaaaat? You know what this is? You recognize the secret code?” [laughs] And the Bi guy is like, “Yeah, I was in the LGBT society at Uni.” [laughs] Oh, did I say that was Damien? That wasn’t Damien. That was Jana. That was Jana who had the Ace ring.
Courtney: So, I guess maybe that is the balance that we strike here: we just talk about the representation and not, like, the actual plot of the book. [laughing] Because I took almost no notes about that. It was true crime-related. There was a local girl who went missing, and Cara and Damien start investigating her disappearance. There are plenty of people who have sort of given up the search, but as true crime aficionados, they’re like, “Well, we can true-crime this bitch!” [laughs] and they do that.
Courtney: And most of the time, as a fiction, it was fine. But there was one scene where I did cringe a little bit and I had to, like, re-remind myself that [laughing] this is fiction, and then I could calm down and just, like, enjoy the story more. But I mentioned one of my issues of true crime not being respectful to, you know, the survivors, the family, the friends. And there’s someone who was close with this girl who disappeared. And I, honestly, since I didn’t take a note, I don’t remember if it was a family member or if it was, like, a best friend. But she was working at a store and they just, like, went to the store and kind of started lightly questioning her and bringing it up in their response, and it, like, really upset her to be talking about it. And that was one moment where I was like, “Oh no, don’t! Don’t do that. Don’t do that.”
Courtney: In their escapades, they learn many things. But then they start a true crime podcast. They start a podcast together, and they become a couple. What sort of weirdo Asexual couple starts a podcast together, I ask you! Unrealistic and nauseating.
Royce: Worst part of the whole book.
Courtney: Worst part of the whole book. The Asexual couple makes a podcast. But no, in all honesty, I mean, for my own personal reading habits, this was a very quick, light, easy read for me. And so for something that I could just, like, sit down and read in a day, I found it perfectly lovely. As I mentioned throughout this podcast, there were a lot of components of the representation on all sides — the Ace spectrum and the chronic illness spectrum — that I don’t see done in such a nuanced way very often, so that was very refreshing. Very clearly Own Voices; it says right on the back cover. But you can tell it was done with a lot of love and a lot of knowledge of these themes.
Courtney: So, on that note, we will be putting the author’s information in the show notes, places where you can buy this book, as well as others, should any others appeal to you. Definitely, definitely do recommend it. I would say, from my perspective — because I’ve said many times on this podcast, I do like to learn something new when I’m reading, even if it’s fiction — sometimes, especially if it’s fiction. If there’s a fictional story that’s just sort of telling me everything that I already know, I don’t always find enjoyment out of it. And for me, as steeped in, like, the Ace community and Ace theory as I am, there wasn’t anything new or revelatory in the Ace representation. That doesn’t mean it wasn’t handled well. It was handled very well. And I imagine a lot of people reading this learn something new. I personally didn’t learn anything new on that front, but I definitely did learn more about this experience with Lyme disease, and dealing with Lyme disease in the NHS, no less. So I really, really did enjoy that facet.
Courtney: So kudos to the author. Thank you for a lovely book. If you want to read the Acest, most disabled book [laughing] that I have yet to find, jump down to the show notes, click that link, support this author, support all Ace authors. And we will see you all next time.