Jane - Screenwriter Navigates Misophonia in Life and Career

S3 E12 - 12/23/2020
This episode features Jane, a screenwriter living in Germany with misophonia, discussing her journey. Jane shares her struggles with misophonia through her early years in the UK, working in the design industry, and transitioning to screenwriting, emphasizing how the condition shaped her career choices towards solitary work environments. She delves into the complex dynamics of relationships when dealing with misophonia, highlighting moments of denial and the impact on her marriages and parenting. Jane reveals the challenges of raising children with the condition, particularly how she navigated their sensitivities and her fears of hereditary misophonia. The conversation also explores Jane's coping mechanisms, including the importance of exercise and acceptance of the condition, and concludes with her reflections on misophonia's influence on personal identity and social interactions.


Adeel [0:00]: Welcome to the Misophonia podcast. This is episode 12 of season 3. My name is Adeel Ahmad and I have Misophonia. I hope everyone is able to take some time to themselves this week at the end of a truly effed up year. I know for me it's always a time of reflection and planting seeds for what I want to do and how I want to feel in the next year. This is particularly interesting as we come out of 2020 and stare down a new decade. I briefly considered pausing the show for the holidays, but instead, I bring an amazing sort of two-part series featuring mother and daughter, both misophones, in Germany. In part one today, I talk to Jane, and we go through her early years of misophonia in the UK, working on both sides of the Atlantic, going through multiple marriages, raising children who also have miso, and now in her life in Germany as a screenwriter. The interview concludes with the story of a truly beautiful moment on a train that's well worth the wait here. Well, not really a wait because this hour flies by with great insights about all of our shared experiences with this condition. Can't think of a better way to end the year, especially with part two next week, an interview with one of Jane's daughters. Don't forget that you can book your own interviews for next season, season four. They'll be recorded in March, and you can go to misophoniapodcast.com and look for the Be A Guest link. There'll be a direct link in the show notes, too. And remember, these all happen over Zoom. You don't need to prepare or anything. It's very casual, like a couple of friends talking. Also, people have been volunteering to help proofread transcripts of these shows, something I'm getting a lot of requests from people who just can't really listen to conversations without being triggered. The shows are actually mostly transcribed automatically by a machine, and they just need someone to clean up the errors that get made. I'm happy to send over the text files to anyone who wants to review and edit them and like I've said before I'm happy to pay back in gift cards or whatever. All right now here's my conversation with Jane. Jane welcome to the podcast good to have you here.

Jane [2:21]: Thank you it's a pleasure.

Adeel [2:23]: So as the I've probably introduced it just before I played started playing our interview we have Your daughter is going to be coming up in an upcoming episode. So it's great to have a mother-daughter kind of doubleheader. Do you want to maybe kind of introduce yourself, actually? Kind of maybe tell us where you're located.

Jane [2:47]: Yes, I'm located. That's something I should probably apologize for in advance. I'm a British person who studied in the U.S., but has been living in Germany for over 20 years in Hamburg. So my English here and there is getting a little bit rusty, but we'll see how far we get. And yeah, I'm a script writer, freelance, and I have a couple of adult daughters. One of them is going to turn 30 this month, and the younger one is 23. And I live here with my husband and a very ugly little dog that we love a lot.

Adeel [3:29]: That's great. Yeah. You know, you're going to, you're going to, this sounds great. So, so you're, you're a script writer. So if for films, TV or.

Jane [3:40]: Mostly, mostly cinema. Fingers crossed that that's going to keep, keep going. We're going to be able to flood back into the cinema. the cinema soon, but also streaming and a few TV things here in Germany. But as of yet, only the things that have been filmed have all been German language. And I've got some English language projects coming up.

Adeel [4:04]: Oh, wow. Okay. Very cool. And when you do that work, is it pretty kind of, even before all this COVID stuff, is it something that you're kind of solitary in your work environment?

Jane [4:18]: Yeah, I could imagine that... I could imagine... I mean, I'm waiting to binge listen to your podcast because I didn't want to get too intimidated with what other people are saying and, oh, my God, my story is interesting or relevant. But I could imagine that there are a lot of us that seek some kind of, if not isolation, but an environment that we can control. I studied fine art, so... I quickly kind of realized and then fell into design. I was kind of in an office environment, product design, interior design, different kind of design areas. And I realized that I was always, I wouldn't say looking for a home, but looking for a secure environment where I could just work well, I suppose. It's not the best way of articulating it, but just where I felt comfortable. And I've always, I'd always been interested in writing and storytelling in one form or another. And one thing led to another, a chance meeting. And I fell into this area, kind of studied a couple of semesters at NYU, went back and yeah, got into script writing. So I'm always, almost always writing on my own. I only write on my own. But of course, it's a collaborative experience because there are islands of getting together with directors and producers, obviously, from the start and editors. And so there are these islands of collaboration where I'm not working on my own.

Adeel [6:01]: right and do you go uh when you're collaborating um is these days is it well i guess these days it's definitely remote but uh um are you going to meet people and when you're when you're writing usually or um sitting on the typewriter together no because i always i mean this is something that's come up especially in the last couple of years where this the decision

Jane [6:26]: Do I go into a series? Do I go into a writer's room? And I just quickly realized, even without experimenting, that that wouldn't be a route for me right now. I don't know if it could be a route for me long term. I'm not quite sure because the idea of developing characters over a long stretch of time is, of course, you know, it's very tempting and I'd love to do it, but I think just within my own limitations that Miso brings with it, that I think a writer's room would be tough. Because there's always a lot of food in writer's rooms.

Adeel [7:02]: Oh, yeah. Well, there's writer's rooms and there's also kind of the reading table as well, probably, where... Same kind of thing.

Jane [7:09]: Yeah. There's always a buffet set up somewhere and it's, you know... Catered. Yeah. And it's a similar kind of setup when I get together to read through books and also to... know talk about changes that need to be made or whatever within this kind of process where you where it becomes more collaborative and then those are those situations but i always know that it's something that uh it's a controlled period of time and then i'm back to sitting on my own and writing and then my full focus is on my work because i'm very relaxed then unless of course i'm thinking in two days time then i'm less relaxed

Adeel [7:50]: Yeah, it's funny that you said that you have not yet kind of binged a number of episodes because you actually you've hit upon several themes that have been very common. One being obviously controlling your work environment. Another being kind of time boxing or mentally thinking about the fact that, you know. some meeting or whatever is going to be over and then you can go back to, you know, a comfortable environment for yourself. These are very common kind of experiences that that misophones all over the world kind of experience. And one thing, yeah, one thing i want to uh uh double double check on um did you were you saying that um you know you've obviously had a very varied career is is um have you been like intentionally uh trying to design your environment throughout your career to be more kind of solitary and focused um or was it something that you kind of uh kind of fell into it sounded like maybe you were kind of directing yourself toward yes i'd say definitely subconsciously i think that

Jane [8:55]: I think we're kind of, I think all of us, depending on when your first experiences and childhood and what that was like, but it's kind of, you know, what came first, the chicken or the egg. You are, you do become someone who's hyper aware of environments and your own limitations. And so I can't say that I consciously decided that I wanted to take up this profession to sit in a room on my own. but I did avoid situations where, office situations or community work situations. So the moment I found this and it wasn't, because I could have had that with fine art and painting, but I just, I couldn't support my family. I was a single mother for a while and I couldn't support um my family with that income so i've been kind of lucky that i've found something that's lucrative enough that i can support the family where needs be and uh and it's something that i i love doing and i'm on my own but it wasn't a conscious decision how can i get in a room and work on my own but everything that was leading up to that kind of, you know, channeled into where do I feel the most safe and what's the optimal working environment for my character.

Adeel [10:15]: Yeah, your brain was primed for, you could instantly recognize that, yeah, this feels right. And you kind of went with that.

Jane [10:23]: Yeah.

Adeel [10:26]: Yeah. Interesting. So yeah, maybe do you want to like maybe rewind all the way back to kind of early days for you? When did you start to notice things were different?

Jane [10:41]: I would say I've been thinking a lot about this. I think there are very clear memories. I think about when I was five. and uh it's something i have an older sister she's 12 years older than me there was just the two of us i think i was an afterthought and and so she got to have the pleasure of in her teenage years to look after this for a five-year-old and she quickly picked up on my sensitivity to eating noises and had a lot of fun teasing me with it. So those are kind of my first memories. I definitely grew up in a family of, yeah, I wouldn't say quiet eaters. I mean, each one had their own niche of noises. My father, I don't know if this is a thing in the US or it was a thing, But when my father was a young man, I grew up in the north of England in Manchester in a very working class environment. And for some reason, it was a thing that you had to avoid dental costs or dental visits. You had your teeth removed and you had false teeth. So both my parents had false teeth. And my father... I actually liked to take his out whilst eating, unless it was a caramel. And none of those scenarios were great. So it was a very, but on the other hand, it was a working class environment. We didn't, I don't know if you know anything about these kind of Billy Elliot-y kind of backgrounds, but it was very rarely, I mean, Christmas and birthdays were sat at a table, but otherwise it was dinner on our knee and the TV was always on. So that definitely helped me. But my earliest memory was from being five.

Adeel [12:34]: Gotcha. Okay. Yeah. Yeah. I've definitely heard that where it's a sibling can, you know, obviously there's, it's always pretty much always starts with the family, often the dad. And it's interesting that I've never heard that story of the dental, kind of a dental origin.

Jane [12:53]: But I have to say, though, that what I always recognize, because it was obviously joking aside, it was obviously, you know, it's kind of a breach of trust. You do want, of course, I wanted my big sister to love me and think I was great. But in retrospect, misophonia for someone who doesn't understand it does offer a huge entertainment potential. And that kind of milked in our dynamics. So, you know, the chasing, the pinning me down and eating and, you know, it was just a great year. And it was just, it was like a party game.

Adeel [13:31]: Yeah. Okay.

Jane [13:33]: People said similar things probably with siblings.

Adeel [13:36]: Yeah. Yeah. This is definitely not the first time, first time I've heard that. Did you, how did you, I guess, how did you react and did you tell your parents and did they offer any kind of... enforcement of rules or care?

Jane [13:53]: Well, my I think, again, I mean, I've only, I know my daughter, obviously, with misophonia, and I met once, which I can get back to, many years ago, about 15 years ago, I met a stranger on a train, a man on a train, and we sat opposite each other with a packed, each with a little cellophane-wrapped package of cookies and neither one of us have wanted to eat in front of the other and then we figured it out but but other than that i don't know other people with misophonia but um i could imagine that this it's very individual because it's what you do sense is is that your um This tsunami of emotions that you feel that are triggered by this, this, which obviously to everybody else that I knew all of my friends, family was a normal, healthy thing makes you feel guilty. I mean, so I was going through a lot of different things. And with each of them on a different level, my father always joked about it. So that was the one thing that was kind of the ridicule thing. This, my sister kind of teased me and used it for different, you know, power play things. And, and my mom was just, my mom wasn't really someone who was very interested in how other people felt. I mean, I had, I, you know i i i love my family to bits and i i am i loved my parents and but you know those were that's subjectively what i was going through but i was always conscious of the fact that i was kind of letting the side down because human was such a big thing in our family and i couldn't laugh about it i was i was it ended in tears or rage or door slamming or they didn't understand my need to to escape and to you know this feeling of trapped and so it was very difficult and i was made to sit still and not i wasn't allowed to complete complain at some point yeah so i'm sure a lot of other people have been to a similar thing

Adeel [16:13]: Yeah, I've heard from others in the UK that, well, there's that kind of culture of just dealing with stuff or just not kind of complaining or sticking out, I've heard. But it's also interesting what you said about humor. It's kind of an interesting dimension because humor, when we make, we can kind of like use humor as a coping mechanism. I've heard that a lot, but when it's kind of used against you it's it's almost like doubly bad and yeah and then you get that that ridicule and And that can lead to just that shame and guilt. Did it start to kind of like have a negative impact on, I mean, it sounds like, you know, your family all loves each other. Did it start to have a negative impact on your relationships with any of your family members, your parents?

Jane [17:02]: Definitely. I mean, just circling back to the humor side. I mean, I definitely, through my life, I've used humor, sort of self-effacing to deal with it. I've never... I mean, up until the last, I mean, I'm, I'm, I'm, I'm over 50 and up until the last two years, I didn't only two or three people in my circle of friends that know about it. Um, and my husband, I told from the beginning 16 years ago, because I'd been through so many other relationships to get to one that I thought I'm going to have to tell him, but of course it didn't have a name back then. So all I could tell him is that I'm a little bit sensitive and thankfully he's one of the few people that I've met that didn't take it personally. And now when I'm just being, you know, when I go to the, to the, the cycle, when I'm just, I'm so triggered that I just get into a quick rage. I can also use humor to explain to him, you know, I try and find comparisons with humor to the, to the noise or to the feelings. And I can normally get him with that. So, but my, the family dynamics, i think it was the blueprint for future relationships where i felt i've definitely always felt loved but within that that comfort and that feeling of being loved i felt isolated i felt like an outsider within this group of people that loved me small group and also you know the same thing in the circle of friends i knew that i was was cared for and the people liked me to a certain extent but i was always the outsider looking in someone else got to define what was normal and that was not me whether it was some whether whether it was through discussions um uh you know little little moments uh where i would say oh do you think you could maybe just get rid of the chewing gum and then the person got defensive and then I had to just, it was always a little bit awkward and I was always on the outside.

Adeel [19:13]: Yeah, it must get kind of exhausting to have to kind of be the only one who's trying to explain that over and over. Did it ever feel like the others were, I don't know, ganging up seems like a strong word, but kind of like talking amongst themselves about your condition and kind of like... You are a bit of the, you are the idiot.

Jane [19:35]: And it's not even, and I think this is if you've spoken to British people again, you know, the thing is, is that... English people there is a kind of extraversion but on the other hand it's don't look at me so you want to be invisible but you still want to be like part of the gang and it's it was it is a tricky it's a fine line because a bit of a tightrope because to be able to survive with misophonia you do have to be in constant control of your environment and you sometimes have to just If there's no other escape route, you have to probably come to coping mechanisms later. But at an earlier age, I didn't have any coping mechanisms except for flight.

Adeel [20:23]: Flight.

Jane [20:24]: Escape. Yeah. Or to grin and bear it, which became at some point absolutely impossible. Or just try and with my best friends, just carefully broach the subject. But you are kind of the idiot. And if a couple of friends get together and they know about it, then you just kind of learn to deal with it. I just stopped telling people. I mean, as of the age of 17, I didn't tell anyone I had. When I lived in New York, I was in my early 20s. I had one blowout friend with my best friend at that time had a Triscuits addiction. She was never anywhere without a box of Triscuits. And at some point, I was literally, I thought either I'm going to have an aneurysm or I have to say something. And it blew up into this huge fight. But so after that, I didn't mention it again, really. I just reacted, but I didn't ever make it a subject of conversation.

Adeel [21:26]: Yeah, I mean, it's exhausting to kind of just deal with it and then to bring it up for like the, you know, 20th time. It's always like, we just don't want to have to do that. So I totally understand that you don't want to avoid the subject. Yeah.

Jane [21:42]: You just pull yourself at some point with it.

Adeel [21:44]: So how did you react then after that? Like, you know, after you stopped telling people, did it just turn purely flight at that point? Because now you're an adult, right? You were in New York and this has come up a lot. It's like, you know, after people are done with, you know, high school, elementary, secondary school kind of thing, they have a little bit more control over their environment in college and whatnot. Were you then basically just leaving situations and starting to kind of like... navigate life that way by avoiding avoidance?

Jane [22:15]: I definitely learned, I definitely, the luxury from leaving home to go study, the luxury of being able to self-isolate, ironically in these times, it's the last thing that we want to do, but it was, it was definitely gave me a sense of empowerment and, and also made me less, because I didn't, because I thought there was a phase, especially my last years living at home, I was kind of losing hope that I would ever find a place where I could just breathe normally, just not being on high alert 24-7 or whenever I'm around other people. So I enjoyed that very much. I did there start to form patterns that have absolutely defined the further years of my adult life. I wouldn't say I'm a hermit, but I'm definitely someone that spends a lot of time alone. And I'm comfortable that way, even though I've got friends that I love. But I do... I think within my circle of friends, I'm definitely the different one. Everybody else that I know and care for are people that want to be in groups and spend a lot of time together and travel together. And I can only do that up to, you know, within certain... Yep.

Adeel [23:54]: Parameters. Yeah. Yeah, it's funny. Yeah, I'm sure if you told, if you were in a room full of us, you don't even have to go too deep into that. We all understand kind of those little compromises.

Jane [24:10]: I love it. I've got my people. I love it.

Adeel [24:15]: But yeah, but then, so yeah, interesting. So maybe just about your family again, have you... You haven't told a lot of people, but did you ever get to tell your family members about Misophonia?

Jane [24:28]: No, well, unfortunately, my mother passed away when I was 22. And my father passed away before I could give it a name. So it was just, oh, Jane, you know, it was just like I was still, you know, she said, oh, we're eating. So it was still that. I don't know if it would have really changed anything to be honest, because I think I could have, because I mean, I know, I know it's got a name and it's only, and even since reading, initially reading the New York Times article that, you know, I don't think I've ever had such a, such a happy cry. I was literally sobbing when I realized it's got a name. And that was even before there had been research done into it. But, But it's only through recognizing how it's formed my daughter's life, my adult daughter's life that's turning 30, that I became more aware of it because I'd kind of got used to, it was just who I was. So I wasn't even discussing it with my family. I wasn't even defensive anymore about it. I just let them, yeah, you know, this is what I'm like, do I have to, do I have to come down for breakfast if everyone's having cereal and there's no radio on in the background. I'd kind of, I'd kind of within the core, uh, family unit, I would, uh, um, like with cousins and there's a cousin I'm very close to and niece and nephews. I was, I was, uh, you know, they knew just to leave me alone when it was crunchy toast and cereal time.

Adeel [26:08]: yeah right okay um and yeah it's just a funny time sometimes talking to people who have me so and we have such shared experiences i almost don't know what to ask next because i know like can we you know it's just like we have the same habits and stuff just like i almost don't need to know anything new but i kind of um yeah i do want to let's let's talk about maybe when you did find out that it had a name and by the way like um You're totally right on, well, obviously you're right on everything, but you're totally right that sometimes it just doesn't make a difference because all these years later, a lot of us, we still get the same reaction from friends and family members. And so it's so early innings, early days for this that I'm hoping

Jane [26:51]: future generations who won't have to deal with this but it's yeah it's I think that's the most important thing for me because I have found whether it's whether it's a healthy way of dealing with it or not but I've definitely found a way to kind of kind of maneuver the you know sidestep obstacles that I know and but I mean to think of you know small children with it going through what what we all went through when we were small, I just really would like to, you know, try and work on awareness. I keep trying to think about, okay, in a script, where can I sneak in a miso? But I'm like, how many would it be a drama? What is it? Is it art house? Could I make it commercial? So I'm still kind of like playing around with the idea of where and how, and I haven't quite grasped it yet because when I do, and if I do, then I, you know, I really want it to be, a character that we can empathize with. And I think very few people can empathize with us because it's just, It's just so abstract. It's just like, well, it's a noise. You know, it's a noise. Get over it. They don't understand what, you know, what happens to us, you know. So, yeah, so that's in the back of my mind. But for future generations, we've all got to, you know, that's why this podcast is just fantastic. I mean, thank you so much for doing this. It's just, you know, it's great getting the word out.

Adeel [28:22]: Yeah, no, and it's not just, I want to get the word out, but also, you know, just kind of dive deep into like the backgrounds of people and try to normalize it that way. We're all just, you know, normal humans and dealing with stuff. Miso's deal with very similar experiences. And I don't think we all realize that when we're just reading our own rants, maybe on a Facebook group. So, yeah.

Jane [28:47]: I've actually got a question where this is concerned, because I've got the feeling over the years that the miso, it's a kind of a shapeshifter as well. I mean, I don't know if everybody has the same experiences, but what I've definitely noticed is it used to only be eating or drinking noises. And sometimes it's just moved one degree further away also, in addition to the eating and drinking noise, which is, of course, but things like if I'm going to a supermarket and someone holds a... plastic covered crinkly packet of noodles or something then i'm triggered so because i kind of know that that's food or if i hear ice in a glass i'm triggered so i have i have the feeling that um uh that kind of neurologically this the stain is spreading you know on the it's um and i don't know if other people have that experience too and also which didn't used to bother me um hand movements or any kind of quick movements or tapping or these kind of things. So I'm becoming more aware of peripheral things as well now.

Adeel [30:01]: Oh, yeah, you're hitting upon visual triggers and something that's called mesokinesia, which is another word for visual triggers or being triggered by movement. And that comes up, you'll hear on pretty much every episode where it kind of usually starts with these kind of auditory triggers. triggers and that's obviously still the the vast majority but then visual triggers uh tend to creep in later and um yeah and then i've kind of conjectured that it's like uh your brain kind of preparing you for a potential sound or um a potential you know perceived danger um so yeah that's that's very common that's very common what you're experiencing

Jane [30:47]: did um i i went just going back to the to the parents thing one episode comes to mind and i went with a bus from so like a an english version of the greyhound bus with my mom who was the noisiest messiest eater and i had a window seat next to her so it was it was the two of us went from manchester to the south of france in a bus and she took with her a bag full of oranges And I was 14 and I thought, I'm just going to come. There's no way I'm going to get through this trip. And she literally, she would like peel off just the top of the orange. And I couldn't. And I'll never forget that because at the same time, I was kind of like taking mental notes of how funny this actually was, but dying inside at the same time. I've never felt so trapped in my whole life. And also another incident, I've been married before and I found relationships quite testing, you know, this kind of closeness. At the beginning when you're very much in love, it's, you know, I don't know, something hormonal happens where you you look away or you don't listen or you, I, you can tolerate it. I think much better, but then at some point the honeymoon phase is over and I definitely, um, I mean, I left my first husband or at least took him to one side and said, I'm leaving in the middle of a Chinese meal because I knew at that moment, I can't, I can't do one more meal. I just can't do it. And that's also quite a sad thing when you realize that it defines also who and how you can love and i think that's also important for for me with with my daughter and just to help and guide her to let's try and find ways of coping and you know and uh the more information we have and the the the more effective treatment whatever the different treatments are and you know I just want to throw that in there.

Adeel [32:56]: Yeah, no, that's... Yeah, the orange is right. Yeah, that sounds like a crazy, crazy... That sounds like a long trip being trapped there. And that's before probably there were, you know, earbuds and headphones to protect you.

Jane [33:12]: Oh, there was nothing. There was nothing. There was only orange. I mean, okay, there was the sound of the motor. So I wasn't, you know, we weren't in a Zen cloister, but... still that I even now I can hear the slurping of the oranges it's just it triggered me now

Adeel [33:29]: Yeah, I think a lot of our listeners might not even know what a Walkman is. I'm very familiar, but they probably don't even know what an iPod is. That's where we are in the world. But yeah, very interesting. And so, okay, so yeah, maybe you hit several of the things that I have in my notes I want to get back to, but I don't want to go to that scene in the Chinese restaurant. So was that, did you leave your... Was misophonia the kind of like main factor for leaving that husband or was that kind of icing on the cake?

Jane [34:08]: Just to set the scene, it was Chinese food at home and a friend of mine from England had come to stay and it was the three of us in the living room, kneeling around the coffee table, eating the Chinese food and there was no background noise on. no background sound because I hadn't really discovered I didn't really have the self-confidence to always say that I wanted that in the meantime that's changed a little um and I have to add that I have a bit of an Elizabeth Taylor background because this my current husband who I've been together with for 16 years and where you know it's for life is my third husband so um the Chinese food walkout.

Adeel [34:53]: I think you're only half of an Elizabeth Taylor, I believe, so don't worry. You have a ways to go.

Jane [34:59]: well she hadn't because richard batman was twice so maybe if that goes right but um i'm happy to stay half of elizabeth taylor and no so it became it was a kind of a question that's my first marriage it was my first ever living together with someone and um i just i just underestimated the limitations and that was the chinese meal walkout and That was 100%. The decision to walk away from the marriage was 100% driven by misophonia. In retrospect, our characters were very different. So maybe it wouldn't have got to that point. I don't know. But it was definitely misophonia that just pushed me over the edge. I just knew I couldn't deal with one more meal. I just knew it.

Adeel [35:54]: Yeah, fascinating. And so then going into subsequent relationships, did you basically, you know, make sure that that was not going to be an issue or try to make sure that that was not going to be an issue?

Jane [36:08]: No, for quite a long time, I could literally hide my own Easter eggs. I just didn't know. I was in denial. I didn't want to, I didn't want misophonia to win. So there was my next... um very serious relationship was one that again at the beginning i just i mean if i was sitting in a room full of misophonia people i would ask them now i mean the thing is is that is that it's i knew myself so well but i didn't want to accept that side of my character or this this I didn't want to see it as something that defined me and that was a dangerous path because in in in in in kind of denying what a defining element it is in my character I was I was setting myself self up to fail because I wasn't from the beginning being honest about um how strong my feelings are to certain noises I wasn't I just didn't look for the dialogue. I just sent signals that I don't really like eating noises, but I never explained what was happening to me. I don't think I explained, apart from to my husband now and to my children now, I don't think I've ever explained to anyone what I felt. I just know that after my first marriage failed, I fell into a huge depression, but it was also a postnatal depression. But I remember sitting in front of a psychiatrist trying to explain to him what was going on. And he said, never tell anyone that. And I said, what? Yeah, German's got to love him. He said, never tell anyone that because he said, I don't understand what you're telling me. no one will understand what you're telling them and it will make you feel more alienated. And at the time, it kind of made sense. In retrospect, I know that that was the moment that the cage door was just slammed shut, you know. So that was that experience. So it took me up to, and my husband, I shouldn't say current husband, my husband.

Adeel [38:35]: Right. That was Elizabeth Taylor's mistake. She kept calling her husband her current husband.

Jane [38:42]: It all kind of blends into one anyway. We were best friends for about two or three years before we got together. And I spent a couple of years telling him, you know, advising him on his relationships. And he tried to advise me on my relationship that I was in. And it was all very neutral. So we got to know everything about one another. And I felt secure going into a relationship that had been platonic and that grew into love. And that gave me a totally different perspective basis of security because it wasn't like if you fall in love and you just you're so afraid to disappoint that person and not live up to their ideal or I was at that time that it caused more problems with the misophonia because I just felt trapped and I felt I was ashamed because it made me very often the bitch and I didn't want to be that person so I fought against it for a long time and now I've kind of found a very peaceful, accepting way. I really love my life now and it doesn't affect me as much as it did. But mostly because I avoid situations where it could do.

Adeel [39:58]: Yeah, I mean, this is an important lesson. I'm sure there are a lot of people who might think that they could fight it and suppress it as long as possible and just kind of deny it. But the sooner you can start to kind of accept that it's there and there's no cure and start to look for ways to cope, I think it'll work in your benefit. And hopefully no one will go to that psychiatrist in Germany. Maybe we'll get his name and number.

Jane [40:29]: I'm tired by now. I have my eye on where you're going. I think what definitely has helped me was, and I've just been in a phase where I've been in a tunnel working with deadlines, so I'm not the poster girl for this at the moment, but whenever I've had periods of daily exercise, getting my adrenaline levels down, then I'm also not, I don't have that heightened awareness of what could come. So if I do get into a situation where I'm triggered, I mean, we all know that, I mean, teething, my God. I mean, there are a couple of shows that I love, I cannot watch because they slurp red wine, the female. So even within your own home, when you're on your own, you can be triggered. But I know that if I go for long walks or if I swim every day or do some kind of cardio that... I'm not, this hyper alertness and awareness is a little bit reduced and that's helped calm me as well.

Adeel [41:33]: Yeah, stress has come up as a stress and adrenaline and exercise have come up as major factors. So yeah, everyone should be keeping that in mind. I guess let's maybe, I want to get back to kind of your a little later get back to kind of your work and this idea of uh of uh having a miso protagonist but maybe let's let's uh let's shift into like how this is kind of informed how you've raised your children um you know we went over in the um earlier in the podcast earlier in the episode how uh life was like in your house did you consciously as you're raising your kids make sure that they had a an ally um or were you just kind of on guard you just want want to make sure that you didn't get triggered

Jane [42:21]: I think that this is one of the trickiest subjects because you want to, first of all, Cleo, the daughter, my youngest daughter doesn't have it. My oldest daughter, she only has self-recognized it in puberty. um while she was going through angry bird phase anyway so it wasn't really definable i i didn't notice at that time that that was her you know not wanting to eat with with your family was a very teenage thing and i would never have thought that it's something that could be inherited so i didn't really have my eye on it but but but from being a baby she was actually hypersensitive to noise So I had my eye on that and didn't quite join the dots with the teenage rage and the hypersensitivity when she was very small. But the moment that I noticed patterns, then of course it was a different dialogue and we were very relaxed around one another because we're like two dolphins that swim through the water. We know exactly what to avoid, what to do. raising my children, I think that each one of them would say, first of all, I think there's a kind of, there's a really lovely expression in German, it's called , and it means puppy protection. That when children are small, for me, my small children couldn't trigger me. So I think it was this kind of puppy protection time. So I wasn't as triggered by them as I would have been by other people. So the home up to each one of them a certain age, I didn't have it. When it started to creep in, this is just from my perspective as the one that could be triggered, first of all, I would... I've definitely told both of them that certain noises I have problems with, but it was mostly crunchiness. I managed to be able to kind of belly breathe and relax around other noises, but crisps or anything crunchy was just, all the mother love in the world could not get me through the crunch. So certain things, and I think with my youngest daughter, she felt, I think if you would ask her, she now, for instance, when she's around people, doesn't feel comfortable eating. So even though there were never rages or I never, I obviously, you do tense up. And I think this tension, especially in cars, where she will be sitting in a car with me and eating something, those were times I know that she knew that mom wasn't really happy. So, and she says now that as an adult, 24 year old, that she's very conscious herself of eating around other people. And that makes me sad. So I think it would be great if also just we could find informed ways of, you know, how to avoid that as best we can. And having my eye on if they would be, had misophonia, as I said with Cleo, definitely hypersensitivity to sound. So I did have my eye on her, but I didn't see it coming then because misophonia started with me around the age of five. By the time she got to the age of 10, 12, I didn't think there would be a later onset of it. I didn't think that was a thing. So I kind of didn't notice then.

Adeel [46:14]: Got it. So you obviously, you were thinking about it at some point because I mean, you have it, but you didn't think, well, I didn't think it was hereditary. So it wasn't top of mind basically for you.

Jane [46:26]: No, it was definitely forefront in my mind is how can I be, because I mean, if I can find a way of putting it, The people that we care for, I mean, there are people that we meet on buses or trains or work and they trigger us and it's not nice. But when we really care for people and they trigger us, it opens up a whole new, I mean, I can think of moments where I've made new friendships and it's been just so special. And then the first noise happens and I feel this distance. I feel this immediate distance and this sadness because I'm like, okay, it's there. and so you can imagine what that feeling is when it's your own child it's the sense of failure is multiplied times a million and the one job that you have to love and protect this child it's it becomes very complicated so i definitely i i i definitely have my eye on anger have my eye on drama leaving rooms, but there must have been attention that they picked up on, especially the way my younger daughter describes, you know, the remnants of what I've...

Adeel [47:43]: The listeners will hear about it, yeah, the week after this airs. But yeah, it's always interesting. I mean, it's interesting that you said that they didn't really trigger you when they were kids. I have two girls as well, young girls as well, and they don't trigger me, thank God. But yeah, but I think that's, yeah, I think it's part of the whole... your brain thinking that you're in danger and it's usually not your offspring. I think your brain is smart enough in most cases to realize your offspring are not a danger. Yeah. So it's a little bit different. But then as they got older, were you maybe helping to kind of coach them as to kind of how to navigate the world?

Jane [48:33]: in general or with what do you mean exactly sorry oh oh um just with coping mechanisms and whatnot um yeah because she is the only one that's got got it so um okay right definitely we've spent a lot of time uh talking about also within her relationships and uh I think that she's, I think she kind of fast tracked, maybe because she saw me and grew up with someone with it, but she fast tracked a lot of the experimentation and denial that I went through and very quickly got into coping mechanisms. And it's in a really sweet relationship where she from the beginning said, we can only move together. when we find the ideal apartment where each of us has a place to withdraw to and he was 100 open which she wasn't in earlier relationships about this is who i am and these are my limitations and it has nothing to do with who how how i love or or if i love it's that's got nothing to do with this is just um something that i bring with me and she's but again also as a mother you see that and um of course i wish i could kind of like um i don't know just just uh um snip that out of a dna and that she hadn't because I know that it doesn't make her life easier. I think it might make it easier knowing that I'm leading a happy life. But, you know, we're very similar where this is concerned, the life that... I don't know how, again, because I have no experience with other people with misophonia, but the one thing that I find just separate from being sensitive to the noises... Our life choices to cope with that deficit makes us not follow, when I'm saying us, but I'm talking mainly for myself. I don't really, it's not a societal norm that the working alone, the being alone, the being happy alone. avoidance of certain situations so i the stigma that comes with that is sometimes i think would it be easier just to go out there and run a mock every time someone you know has a hamburger and gets you know what it's actually i'm controlling my environment to make myself feel safe but you get a different kind of stigma that's attached to it because well where's jane why is jane's not here why what you know I don't know if other people have the same experiences, but I know that Cleo does.

Adeel [51:25]: Yeah. Yeah. No, that's, that's interesting. It's almost kind of like, Oh, what's the, uh, the lesser of, we have to unfortunately deal with what's the lesser of two evils being considered some weird introvert or, um, being on edge. Uh, I think most of us go for the, it's basically fight or flight in kind of a different form. I think most of us move towards, um, Fletch is because it's like stress level. It's just like, it's just, it's just easier.

Jane [51:55]: I mean, it would be Armageddon. I mean, you can't, the other option isn't, isn't an option.

Adeel [52:02]: To go nuclear. Yeah. All the time.

Jane [52:05]: And I have to say, though, I have had moments in my life where if it kind of the compound fracture of the person making the noise, that if they're an asshole, it is actually quite good to go to DEFCON, you know, like to just get rid of all of that aggression. It actually, I've done it a couple of times in my life and not proud of it, but it was, it helped that the person was just, you know...

Adeel [52:33]: I think it, I think I know what you're talking about. Yeah, it just kind of helps you justify it in your mind that you kind of dealt with the situation that way. And it's, it kind of like, I don't know, it kind of makes you kind of almost high five your misophonia as kind of, or just kind of like help you, helps you accept it a little better because it is a part of you. And in a weird way, it makes you feel close to it, which I think just any sense of comfort is good.

Jane [53:00]: Yeah, I think I accept it. definitely been the key for me that I just accept it and don't wait. I'm not waiting for it to go away or think that I'm failing because I can't control it. I've definitely accepted it. And the New York Times article did give me the final push into acceptance.

Adeel [53:20]: And that article was that kind of landmark one from, I think, 2009 or 2011, I believe it was.

Jane [53:27]: It was, yeah. I read it a year later, but it was 2011 that it came out and it just, yeah, I can just see, I know exactly in my mind where I sat and I just sobbed my eyes out. But again, I cried my eyes out and I thought, oh my God, this is just, but I wanted to show everyone, but I thought, but I can't because it still doesn't, even though it's got a name, I didn't feel at that point yet comfortable to say this is who I am. It's taken me a while to, I kind of, maybe this is the Britishness, but this kind of like under the radar, stay invisible, like don't draw attention to yourself kind of thing.

Adeel [54:09]: Yeah, yeah. So you've only told like a small handful of people, right? Other than family members. Did you tell them out of kind of like post incident or just you're close to them and you felt they should know?

Jane [54:26]: Apart from my Triscuit friend, Nana in New York, it's been in the last couple of, last two years, I've told two or three people and it's always been, and it was, instigated by me realizing that one has to raise awareness. It's just ridiculous to just, because it's like a dirty secret otherwise. And that's just ridiculous. And also because of Cleo, I just thought we just have to be normal about this because it's our normal. And, you know, it doesn't mean that we dislike people that if we dislike their noises. And so I've been trying to stay very, just in a very positive way. communicate to people but um it is always the people that you kind of the people that i've told have all dealt with it really well but then can't eat around me So then you get to the next level of, because I love to cook. And if I can control the noises in the background, I love having people around. That's another little, that's a bit of a topic between my husband and I, because I love to invite people here because I control the environment. So I like to be the, what do we call it? but i like to be the the inviter and he likes to be the invitee that he likes to be the one that's invited he doesn't like having oh so that's a bit of a um but normally i love to cook for people but i noticed the people that i've told i mean it's literally as if they they've got an iron rod in their in in in their spine they just sit there it's it's it's tricky it's a bit of a minefield they have to learn that uh you know just leave the controlling up to me you know i'll i'll make sure there's enough noise in the background and some music on and and i'm bashing the pans and and they've just got to um just relax into it but it's a process get into the get into that death metal and that's going on in the background and

Adeel [56:34]: that's definitely the only way to go yeah interesting um yeah so i guess um we're coming yeah i'm coming up up to about an hour it's been fascinating and uh kind of we want to start to kind of uh sort of wrap up but i don't want to i don't want to leave without maybe talking a little bit about um your work and your kind of um i don't know if your your thoughts on uh portraying misophonia in the media and there and i've i've been thinking about that a lot as well because um There was a, I also listened to a movie about a podcast, but Tourette's syndrome. And there was a recently a movie called motherless Brooklyn with a Hollywood movie, which, which kind of centered around a character who had Tourette's. And so since then, I've been thinking about, oh man, this is a ripe opportunity for and, you know, whether it's mainstream or an art house movie that really kind of dives in, a character-driven film. There's been documentaries, but like, this would be amazing. And I think, yeah, just actually the current episode that is out right now is actually a woman in the UK who's a children's author who wrote a short story called Golden about, and you can get it on Amazon, Kindle, about... a fiction story about somebody who had miso and how what happened um and but yeah so it's things are i know maybe i'll send you the link or you can take a look uh uh it's the the rachel episode you should definitely listen to that um but uh yeah maybe i should shut up here but what are your what are your thoughts on um uh have you seen this at all in the media there's actually there's been one um there's a horror movie on a clive barker horror movie on on hulu right now called i think book of blood centers around a girl who uh who has me still is running away from her mother actually might be another reason why you want to want to watch that but um uh i'm curious about uh do you have any sketches

Jane [58:39]: I think it's definitely something that I've been mulling it over for a while now. And I think for me, the most important thing is, is that it isn't trivialized. It isn't kind of wrapped in the kind of humor where we think, oh, that's kind of, you know, that it's, oh God, I only know the German word, that it's like, it's a quirky thing. But I don't, I... Personally, I think if you're going to do it, it has to be done well, especially because it's the first, I don't know about how it's going to be filmed. You know, there are people that say, you know, you see a husband and wife thing and one says, you have to eat like that. But someone that really has misophonia, haven't seen before. And I just would want the viewers to be able to get inside the mind and the belly of someone and know what it feels like. So who do we surround? What kind of characters do we surround that person? Is it a narrative that's plot? Well, it's obviously not plot driven. It's going to be character driven. But do you kind of build a plot around this person who has a journey to make emotionally? Or is it more of an arthouse thing where you can get inside the head in a different way and more intense and dramatic? But it's something that's definitely swirling around my mind. And when I've found the right, I definitely go for it when I've found. If no one gets there first and if someone gets there first and does it well, then I'd be more than happy. But otherwise, I've definitely got my eye on the subject. Yeah, I mean, I think there's a lot of different dimensions.

Adeel [60:21]: So don't worry about if somebody gets there first. I think, yeah, the more the better. But yeah, it's definitely a... I'm just always looking for what movies are coming. I'm really kind of obsessed with seeing this portrayed because I think this would be kind of the next level of...

Jane [60:39]: awareness for us so important I think and that's why I think it's that's why I'm so I've got a lot of respect for you know tackling this and a certain amount of fear because it has to be done right and the first step was I would have to get it right to the script writer and then I would have to let it go and put it into the hands of the next person that would have to get it right so if you know of anything talented misophonia directors so it had because i think it has to be that we understand i don't know i i i don't know if there's a um let me see what how would i put it uh sometimes i ask myself first of all would i want to live with me if i wasn't me would i would I if I didn't have misophonia? Because I think I'm a highly empathetic person and I know that I do have a lot of sensitivity and sensibility about the feelings of others, but is it misophonia that's heightened that in me? Or how would I react if someone tried to explain and I didn't understand? So I think that that's very important within the film that that we take the we go on the journey not just with the person with misophonia but on an equally on a journey with someone who doesn't who isn't doesn't have misophonia and doesn't understand and so how do we bring those people closer into some kind of symbiotic you know relationship it doesn't have to be a romantic relationship it can be father and daughter, but just a different level of understanding. I mean, I think my husband deserves a medal, literally, 16 years of noise avoidance. I mean, literally, he takes it. but he's very kind of self-confident about it. He's never, it's never been an issue of him thinking, you know, he just, okay, no, I get it. No. Yeah. I won't do that then. It's just.

Adeel [62:54]: It should be the last scene of the movie where a man gets a medal. It's like in Star Wars. The weirdest, weirdest ending to an artist's character driven movie, but yeah.

Jane [63:06]: The force will be with him. That's for sure.

Adeel [63:08]: Right. Right. Um, well, uh, I definitely want to follow up on this idea and then from many others, it's been a fascinating conversation. But before we go, I just want to, the man on the train, what happened there?

Jane [63:26]: Oh my goodness, the man on the train. This was a key moment in the whole misophonia, just you are not alone. I was traveling from Dusseldorf to Hamburg. I'd been working in Dusseldorf. And I sat opposite this man on the train. We were about the same age, middle age, 40s. And each had a packet of biscuits in front of them, cookies. And neither wanted to start. If I'm honest, I don't remember how the conversation started, but it did. And we both, we left the cookies closed and I don't know who outed themselves first, but he was a full-blown, just full-blown misophonia. He had his, and he was terribly, terribly, terribly sad. He ate all his meals separately from his family, which I completely understand. He couldn't deal with the noise of his daughters eating, which I thought was heartbreaking because I could imagine what that felt like. And his wife and no one really understood it. And he was just, I mean, sometimes I think, we didn't exchange telephone numbers, but I've often thought, did the marriage survive that kind of a pressure? because he didn't cry but he was getting so choked up describing his life and sense of isolation that uh and then when i told him about my life and and my experiences and feeling many of the same things in different some corners with me were were more intense than his other but we just this complete connection and uh and because there was no name for it at that time the train got into Hamburg and we got off onto the platform and we went our separate ways with the sense of, okay, we've met a fellow Misophonia traveler, but it was still hopeless. It was a kind of a connection that was just so heartfelt and just so special, but it was, each of us was still defeated in our own way, going back to the homes where we didn't, you know, we knew that we were in some way an outsider. So it was very, very special, but not the most euphoric experience that either one of us has had, I don't think.

Adeel [65:53]: Yeah. Wow. Thank you for that. That's one of the most beautiful things I've heard on the podcast. I'm getting choked up here myself. That should definitely be in a movie or something that gets written about it. And yeah, I hope all the best to him, whatever happened to him after.

Jane [66:09]: We all know what that feels like. And that's just so, yeah, yeah. Well, let's... I don't like to have ended on a happy... No, this is perfect. Yeah.

Adeel [66:25]: No, this is perfect. This is perfect. Yeah, well, yeah, Jane, I want to, yeah, thank you so much. This has been a great episode. And we'll be, yeah, we'll be talking to Cleo next week. But yeah, thank you so much. Great stories. And it's great to hear somebody who's, you know, thought about it so much and has kind of lived through so many experiences and relationships. Yeah, really great to hear your insights. Thank you. Thank you so much.

Jane [66:55]: Thank you so much. And I'm now going to start binge listening to your podcast.

Adeel [67:01]: Thank you, Jane. Story at the end always gets me. Incredible conversation. Next Wednesday, you'll get to hear from her daughter, Cleo, in part two of this. Remember, you can be on the podcast too, just by going to the website, misophoniapodcast.com. You can always hit me up on Instagram or Facebook at Missiphonia Podcast or Twitter at Missiphonia Show. If you're enjoying the shows, you know what to do. Hit those five stars on Apple Podcasts. Helps get this show recommended to other listeners. Music, as always, is by Moby. And until next week, wishing you peace and quiet.