Elaine - Educator explores generational misophonia and creative coping.

S7 E1 - 6/1/2023
This episode kicks off the season with Elaine, an educator and reading tutor from New York, who has recently discovered she shares misophonia with her daughter and that it runs in her family. The conversation covers Elaine's career shift due to COVID-19, her experience with different types of triggers such as certain sounds, pets, and even her work environment. Elaine speaks on being a highly sensitive person (HSP), pondering the genetic factors and family history related to misophonia, including her mother’s diagnosis of paranoid schizophrenia which affected her childhood. She talks about the difficulty of explaining misophonia to her husband and the relief of finding understanding through the podcast. Additionally, Elaine delves into her coping strategies, like exercise and distancing herself from triggers, and her creative outlet of writing, culminating in her recitation of a poignant poem about the disorder. The episode closes with Adeel encouraging listener engagement and support for the show.


Adeel [0:01]: Welcome to the Misophonia Podcast, this is Season 7, Episode 1. My name's Adeel Ahmad, and I have Misophonia. I'm so excited to begin this new batch of interviews this season. The seasons are somewhat arbitrary. It's basically a bunch of interviews that are recorded once and then released throughout the year. I'm hoping to do some interesting things this time, like have interviews in different languages, but we'll see. Today's episode is with Elaine, an educator and reading tutor. I believe in the New York State area. I actually forgot now. But anyway, this is a fascinating interview. She just found out about the podcast recently and was inspired by the Lisa Loeb episode to talk to her daughter about misophonia, because Elaine's daughter also has it. And in fact, it seems to run in her family. We talk about the family connections. We talk about her mother, who was diagnosed with paranoid schizophrenia. which had a major impact on Elaine growing up and right up to the time she passed. We talk about explaining Miso to her husband, being triggered by some voices and consonant sounds, being triggered by pets, being an HSP, highly sensitive person, that comes up a lot, how she told her therapist, and finally, at the end, she recites a beautiful poem she wrote about, you guessed it, misophonia. After the show, do let me know what you think. You can reach out by email at hello at misophonypodcast.com or hit me up on Instagram or Facebook at Misophony Podcast. And do head over, leave a quick rating or review wherever you listen to this show. It helps drive us up in the algorithms. Thanks, as always, for the incredible ongoing support of our Patreon supporters. If you feel like contributing financially, you can read all about the various levels at patreon.com slash misophonia podcast. All right, kicking off this season, here's my conversation with Elaine. Elaine, welcome to the podcast. Great to have you here.

Elaine [2:02]: Yeah, thank you for having me. I'm so excited. A little bit nervous, too, but very excited. oh yeah no it flies by and uh yeah it shouldn't be any reason to be nervous but um yeah do you i guess do you want to start off by just telling us kind of like uh where you are what you do yeah definitely so i am in upstate new york and i am a reading tutor so i was a reading teacher and a special education tutor And in 2020, as most of our lives were changed, so was mine. And I was offered a position to work with someone who specializes with students with dyslexia. I'm working with them. So that's kind of where I went. So I quit my full-time reading job. And then I've been doing it ever since. And now I'm also into training other teachers. So it's very exciting. And that's great.

Adeel [2:55]: And is it all virtual?

Elaine [2:58]: Nope. Some of it's virtual and some of it's in person. So I have students locally that I see. But then, yes, a lot of it is virtually, which is so amazing because I actually I work with a student in Switzerland. I work with students in Canada. So, you know, this kids and families I would never meet otherwise. So it's pretty neat. They're virtual.

Adeel [3:18]: Yeah. And, uh, great. And, um, I guess, yeah, I guess maybe, uh, Oh, maybe we can just kind of get into a little bit of, uh, your, your kind of, we should, we'll obviously talk about the poem you wrote, uh, which is very beautiful. Um, but yeah, I guess life, life right now for you, obviously things changed for a lot of us over the past few years for you, uh, job wise. Um, how's life for you kind of sonically, I guess.

Elaine [3:47]: Yeah, so it's interesting. You know, I was thinking so much about the podcast and everyone's experiences, and mine are very similar to a lot of them that I've listened to. So really, it's just, you know, since I was a little kid, just lots of sounds kind of just... know invoke that kind of like we just talk about the fight and flight butterflies yeah and um it's interesting so kind of reflecting back um thinking about my mother and her parents particularly her dad just things she said to me and then actually my own daughter as well so i definitely am a believer of the genetic component um so yeah so it's definitely affected my life in so many different ways um and it's just been a beautiful thing to listen to this podcast. I just have to tell you that. So a little background too, I wanted to give you in terms of how I found you. So I was on Instagram and an ad came up for some earplugs and I was looking at them for my daughter actually and bought them for her. And after I bought them, it said like, oh, check out, you know, these other things. And so your podcast was one of the things to check out. So when I checked it out, the most recent one was the Lisa Loeb interview. And literally, I just cried through the whole thing because I was like, oh, my gosh, here's this person who has, you know, this experience and also is dealing with it with children. And it just really impacted me. And it was just such a beautiful thing to listen to. And the whole time I was like, oh, my gosh, me too, me too.

Adeel [5:38]: It's amazing.

Elaine [5:39]: Yeah. So then I was just determined to listen to every single episode. So I started back at the beginning of the very, you know, season one.

Adeel [5:48]: Yeah, yeah, yeah.

Elaine [5:50]: And then I was like, okay, I was doing the math in my head. I was like, okay, to get through all, you know, because my drive to my office is only about 20 minutes. I was like, okay, get through every single episode.

Adeel [6:00]: Get a two-act fit.

Elaine [6:01]: Yeah, it's going to take a while. So then I started kind of going back and forth between an old one and a new one and an old one and a new one. So, yeah, it's been just really fascinating listening to.

Adeel [6:11]: everything but so yeah yeah no there's some there's some great ones that yeah the least low but that's interesting because yeah obviously like it uh affects her family 24 7 you've never noticed you never kind of necessarily realized that watching her you know her career and her instagram and whatnot but yeah He just goes to tell you that, you know, you just never know what's going on behind the scenes, which, um, so we, well, um, yeah, I don't need to say no, which, uh, which airplanes, but it was in the packaging that it mentioned the podcast or on their website.

Elaine [6:42]: It was on their website. Yeah. I think it's called like Luke. Maybe loophole? Yeah, those ones.

Adeel [6:50]: Oh, interesting that they mention it because I haven't been particularly generous about their performance. But anyways, okay, cool. No, that's really interesting. You're right. I mean, for a lot of us, there is kind of a familial trace, whether it's direct or uncles or cousins have it. The jury's still out necessarily on the DNA genetics, but there's the idea of epigenetics, where traits can be passed on through markers that are placed on the genes. that are created created by uh environmental uh factors and so it's not like it's changing the it's not changing necessarily the dna but it's changing how the dna is expressed and so um these markers are created based on you know environmental stress or something that happens which can basically you know turn on or off um parts of the dna and so as you develop um you could be more likely to you know, maybe possibly to develop something like misophonia if your environment kind of like influences that. I'm not a scientist, but yeah, I didn't realize that there were different factors at play in terms of genetics. But actually, I am curious going back to, you said your mom's parents, were there signs that your grandparents were sensitive to sound?

Elaine [8:21]: Yeah, so my mom would tell me stories about her dad. She told me that her dad had quite a temper on him, which is a side that I never saw. But she said when she was a little girl, he would kind of go crazy if the washing machine was on, or he would get really upset if her mother was vacuuming. Yeah. You know, just those little things that like at the time I didn't know what misophonia was or that it was a thing. And I thought, oh, well, that's interesting that, you know, those two particular things made him like, you know, really upset. And then from my mom. So my mom was also diagnosed with schizophrenia. So like paranoid schizophrenia. So. The beginning of my poem is actually about her because she would say things like that. Like she would say, my mind attracted the crows. And like a crow cawing was one of her triggers. And, you know, as a child, I was kind of like, well, that doesn't make sense. You know, that can't be true. So I always thought I was related to her mental illness. And then just reflecting on Misophonia, I was like, oh, I wonder how much of her... I mean, she was just so troubled, you know, and I just wonder how much of it was the misophonia, you know, to that sensitivity of. But but I think her illness, though, took it a step further in terms of she felt like she was. creating like the like it was her will was creating these situations if that makes sense so um you know like things like that like a cricket like she would say if there were a million crickets outside my window it wouldn't bother me but there's always just the one there's just one cricket making the noise and i can't sleep but i you know she gets so upset and um so yeah she just had you know like i said like we all have different triggers her triggers but she also um i guess internalized it in terms of that she was causing it to happen um so different you know obviously different than oh interesting yeah um did she did did you talk to her about misophonia i didn't know she passed away in 2020 and um You know, I really didn't talk to anybody. And I guess that's part of a little bit of my nervousness for today is just talking about it. I don't talk openly about it. And I think when I try to figure out why, I think it's because... I think it's because there's that, to me, there's almost like the shame, but also the fear that if people knew like how... I don't know how to explain it, but like almost how violent it seems to me of a reaction that they would judge me as being someone who is a violent person, which I am not. So, you know, I think that's a big part of it, too. So for my mom, I didn't really talk to her much about it because she was so sensitive about it, too, and emotional. And she was very erratic. And, you know, my childhood was pretty traumatic with her. So. I didn't really bring it up with her, but now that she's passed, I think a lot of, you know, I just reflect a lot about her life and my life with her and how this definitely, you know, I believe impacted her and she didn't even know about, know about it, you know, so.

Adeel [11:58]: Was, um, was her, so her childhood when her, her, um, dad was, you know, had a temper, what, what, what decade around would that have been?

Elaine [12:06]: Um, yes, she was born in 1946. Okay. So like maybe 50, 60, she was reflecting on her childhood.

Adeel [12:15]: Gotcha. Yeah. Yeah. Um, and then would you say with that temper of her dad, like was her childhood maybe a little bit, uh, rough?

Elaine [12:25]: I'm assuming, you know, she she actually I didn't even meet her parents until I live with my dad and my stepmother because my parents are divorced. And because she didn't want her parents to be in my life because of her childhood. So, yes, I'm assuming it was.

Adeel [12:41]: OK, yeah, right. No, I mean, yeah, there's I'm sure you've probably heard enough episodes to know that there's there's often some. some difficulty growing up that kind of accompanies misophonia. One wonders, I often wonder, is the sensitivity to hearing something that your child self develops to maybe warn you of impending danger. And then this danger where when you're an adult, you don't necessarily need it at that kind of level, but it's something that your body remembers and just cannot shake off.

Elaine [13:21]: Yeah. Yeah. When you've talked about that in previous podcasts, I've definitely thought about that, that that totally makes sense because my mother's behavior was so erratic that, um, you know i used to hide from her you know and and also you know i remember as a child yeah like it's coming home from school being like okay like you had to check the environment like yeah it's a safe environment how is she feeling how is she doing what is she thinking you know um so yeah that totally makes sense about that where did you hide like in your room You know, interestingly, we used to have this big, like almost like a lazy boy kind of rocker chair and the back of it. I remember it was like ripped. I used to hide inside that chair. Like I would go inside it, like with all the coils, you know?

Adeel [14:08]: Yeah.

Elaine [14:09]: Yeah, and I was in my hiding space when I was little. Because she never could find me in there.

Adeel [14:16]: That's okay. Wow, that's amazing. And I was going to ask, have you heard the, you said you're going back and forth, don't be interested in the Eric episode. I don't know if you heard that from, I think it was earlier this season. But he also had a mother. uh i believe the schizophrenia and and she would um take different personalities at night um sometimes and it would um obviously he's got misophonia but i think a lot of it was yeah as a child um having to listen for you know there would maybe be like a a plate breaking or something in the middle of the night that would have been thrown so um you know these kinds of experiences do happen and uh and and so You might hear some interesting parallels in that. Yeah.

Elaine [15:04]: I checked that one out too. Like my plan, my plan is to listen to all of them. Yeah.

Adeel [15:10]: Yeah. Yeah. Okay. And I guess, yeah, maybe sticking, sticking with childhood. What was like, you know, obviously other than hiding inside lazy boys, were you starting to get the typical.

Elaine [15:27]: um it triggers like a eating sounds like dinner table kind of sounds and how are you reacting so yeah when i actually first started noticing it was when i left my mom's and i moved in with my dad and um my stepmother and it was you know probably age like 10 or 11 and It was definitely more around our pets, which is interesting, our cats. So like a cat, you know, bathing itself would just drive me nuts. And the cat like lapping up water, the cat chewing. And it was just so hard for me because I am such an animal lover. I just love animals. I've had. you know rescued pets my whole life and um to be so angered by a sound by this little innocent creature was just very confusing to me and um and frustrating too because it's like why would you know like why would this bother me and then it kind of gradually went into you know the chewing thing ass like dinner time chewing that kind of thing and then as i've gotten older And just again, similarly to a lot of the podcasts, it's just like the triggers have just grown exponentially, just to things that didn't bother me before, like, you know, certain voices, certain, like, how sounds are like. Your other syllables are like accentuated right through voices and then like, you know, clicking and tapping. And again, it's interesting. It's like I feel like as soon as my brain notices the sound, then I'm done for. Because then it's like in my poem that I wrote, it's like it almost to me feels like it's seeking that sound and it's seeking the repetition.

Adeel [17:13]: Yeah, I think you used the word hunting or brain hunting for seeking. Yeah, yeah.

Elaine [17:17]: And that's how it feels. I mean, like, at my office, there's a beautiful bed and breakfast right next to it. And so there's a lot of lawn maintenance that happens at this bed and breakfast. And, like, the leaf blower. I mean, it's leaf blowing for hours on end. And it's like, ah! And, you know, before, like, a leaf blower didn't bother me. But it's like, I don't know. It's whatever noise is kind of...

Adeel [17:42]: interrupting or distracting me from what i'm trying to focus on then that becomes the noise that it's just i can cannot stand so yeah yeah i mean it's yeah it's not um it's not part of your uh your prefrontal conscience it's something more reptilian yeah that is that is reacting that's that's possibly trying to warn you of a danger that doesn't exist And how does it affect your career choices? You obviously have to listen to exactly how people are reading. And how has it affected that?

Elaine [18:22]: Yeah, it's interesting to me, too. It's almost like a selectivity. So, you know, with my own children, I have two children, and with the students that I work with, I feel like I have such a deep love for them that it's almost like my brain excuses them like it makes them um the exception to the rule i don't i don't know i mean sometimes the kids i work with it's after school so they're snacking so sometimes that can be kind of like oh man i wish they weren't you know yeah while we're trying to read because it doesn't really work anyways chewing and reading but um But, yeah, I feel like I can handle that better than a stranger. I don't know. Just because I think it's just because I care so much about and I'm so hyper focused to like with the tutoring. So, like I said, most of my students have the same kind of story and that they didn't get the kind of help they needed in their school. And so they're behind and their self-esteem is really low. And so I just. Hmm. I don't know. I just have a lot of compassion for these children. And so I feel like I'm so hyper-focused on having them make progress and feel good about themselves that, I don't know, the sounds for some reason don't bother me as much. I don't know.

Adeel [19:45]: Yeah. No, I mean, I don't know. I think that's kind of beautiful on many levels because that you're able to, your brain that is so wired to be on edge can make space for that. And also I think a lot of people come on somehow, yeah, some of the brain assigns a non-threat label on kids because they, you know, if this is in fact a threat a uh basically a warning trying to something your body trying to warn you then um you know children are your brain can you know is able to understand that you're not under threat yeah situation maybe that makes some space for that as well um what about like the teachers you trained you find in your workspace in kind of your work environment now that there is

Elaine [20:35]: your teachers can the teachers that you teach can kind of trigger you yeah just sometimes again like the voice thing there's some voices like you know for some reason if like a female voice that like holds out the S sound like longer than any other sound I don't know like oh my god why you know or maybe like a voice that's kind of more nasalized or something I don't know you know and That kind of another thing that reminds me of is what I was thinking about, too, in terms of misophonia is how it's like there's two extremes to the sound. So the sounds that you can't stand, but then there's the sounds that you love. So there's certain voices that I just love, you know, like it's like, oh, that's such a calm voice or I don't know. Just there's certain voices that are like, oh, that's I like that voice, you know. So, you know, it's interesting.

Adeel [21:32]: yeah no that comes up for yeah there's there's people have found kind of like uh or able to identify the sound that they really like um and i think there's some research going into maybe um maybe in real having a device and in real time modify sounds or mask sounds with something that you like as a way of uh potentially um you know coping with life um oh what is what what are your some of your coping methods as you go about your your life

Elaine [21:59]: Yeah, I feel like I don't have too many just because it's more of a hidden thing, I guess, because I don't want to, you know, inconvenience other people. But, I mean, I definitely would say, you know, exercise is helpful if I'm able to, you know. Sometimes I'm doing teacher observations, like video observations that I can pause. So let's say I'm in the office and the leaf blower is like, all right, I cannot listen to one more. I will just go. I will stop. I'll pause and I'll just go for a walk. So I guess getting away is definitely helpful to get out of the situation. You know, the pets, for example, if, you know, the cat decides that he wants to take a bath right in front of me, I'll, you know, just leave the room if I can. So that kind of a thing. And I know, like you said, in a lot of episodes, people talk about, like, mimicking sounds. Yeah. So I think sometimes if I can, like, hum or something, you know, that's helpful to kind of hum through it, through the sound. That'll work. But... Yeah, I don't know. I think it's more, I just have always been the kind of person that keeps everything kind of buried and keeps everything in. So it's more of just internal work.

Adeel [23:22]: brewing i think well i mean it sounds like you've experienced you you sound like you've experienced a lot of stuff growing up that most people i mean would not understand maybe that's i'm just speculating yeah it's tough to kind of explain some of this stuff um to other people and disappointing definitely it's hard to explain have you tried to talk to other people because a lot of us you know we get shut down a lot and so after a while we just get tired of even trying right

Elaine [23:50]: Yeah, well, it's interesting. So for my husband, I tried to explain it to him. And also because my daughter, I'm 100% sure that she has this. And to try to explain what she's going through so he can have a perspective. And he's very quiet when I explain it. So I kind of take that as he just doesn't get it. He just doesn't understand. You know, because even, you know... again in the episodes talk about just visual triggers so like even if like the cat let's say like the cat is on the bed and licking itself but there's like a TV show going on. So you can't even hear it. I still cannot, I still have to like remove the cat and he's like, how, how can that bother you? You can't even hear it. Like, you know, and it's like trying to explain it to him. He just, he just doesn't.

Adeel [24:41]: Everyone listening understands, but yeah. And so how did, um, yeah, I'm curious if when your daughter started to, um,

Elaine [24:52]: express uh misophonia did you talk to her about her what way i mean how did you approach that yeah so it's funny so when i listened to your podcast the lisa lobe one i said to her um you've got to listen to this with me so when she was in the car like you know how old is she she's 12 she'll be 13 okay okay yeah in july and um i was like you know this is what's what's going on you know like i was just so excited and just so um And I'm just so happy that this podcast exists. Honestly, you have no idea. And, you know, so I wanted to share it with her. And I don't know, preteen kind of typical response, like, okay, whatever. Like, you know, not that big of a deal to her. But it's interesting, you know, because she has recently talked to me about... she has a social studies class and there's like a teacher assistant in there and she said to me something like i i can't deal like i cannot i literally cannot focus because this woman sits next to her and breathes really heavily so that's one of her triggers is breathing and she's like i can't i just can't she's like it's you know the whole period i i have no idea what's going on in my class because all i can hear is this woman breathing and i can't take it And so we've talked about, you know, me talking to her guidance counselor and trying to explain to the guidance counselor what misophonia is. And again, like you're saying, a lot of people just don't get it, you know. And so I've contemplated because is it Dr. Is it Marcia?

Adeel [26:29]: Is it Marcia Johnson?

Elaine [26:30]: Yeah. So she I called there to see if I could make like a consult appointment. um, for her to see if perhaps I could get an official diagnosis and then she could have a 504. So these people know, like, I'm not just like this annoying mom that's like complaining, you know, because I, it's more than that. And, but at the same time, I feel like if I had it from a doctor instead of just a mom, maybe they would take it more seriously. So anyway, so we're thinking about doing that. Um, it's just tricky because of health insurance and all that different state stuff. But, um, But, yeah, I mean, she, so I would say probably within the past, you know, year or two, I've really noticed it with her with a lot of sounds. Like she doesn't like coughing.

Adeel [27:18]: Throat clearing, maybe.

Elaine [27:21]: Yeah, throat clearing. And the breathing thing is definitely a big one because she has a little brother who's always congested. He has allergies. And, you know, we'll be in the car and she'll be like. stop breathing. It's like, it's like he, he can't not breathe. So what are we, you know, how can we, how can we help? You know? So that's when I was looking into those earplugs and then.

Adeel [27:43]: Yeah.

Elaine [27:44]: Yeah. So that's kind of where that came from.

Adeel [27:47]: Did you wear headphones a lot?

Elaine [27:48]: So, yeah. So now she has, you know, I was, I'm, I'm someone who's very cautious when it comes to technology, just because of all of the research out there with teens and screens and, you know, Um, yeah. And also our family just has a history of mental health concerns, like, you know, depression, anxiety. So I was really resistant to getting her a phone. I really did not want to give her a phone.

Adeel [28:14]: You don't have to give her a phone. Just give her an old Walkman from 1983. Yeah.

Elaine [28:18]: Well, we ended up getting her one. We got her the Bark phone. I don't know if you've heard of the Bark phone, but we did get it. So you can monitor it a lot. So now that's her go-to is having that with headphones. Yeah, in the car. So that's great. She can always put her headphones in with that.

Adeel [28:36]: And growing up, I'm curious, did she observe your reaction?

Elaine [28:42]: It's so funny that you ask that because to be honest with you, I think that my husband's point of view is that I created this and I don't think he realizes how hurtful that is by saying something like that but he did say you know like um you know when she was little because she would kind of shush the pets too like if the pet was licking or chewing and she would be like you know Mumu stop you know like we had our dog Mumu and um And he was just like, oh, great. Now you've made it so that she's going to be like this. And for a while, I did feel a little bit like questioning myself. Like, did I, like through modeling? like caused this, but then it's like, okay, no, I don't, I don't think that you can cause a disorder to another person, obviously, but, um, I'm sure I didn't help the situation by doing that in front of her.

Adeel [29:32]: Right. I wasn't trying to, right. I definitely don't want, yeah, I don't want to suggest that it's, uh, yeah, that anybody causes it for somebody else. But, uh, I'm, you know, just think, just thinking about, um, obviously, you know, it sounds like you don't have the temper of your grandfather, but I'm just curious, you know, sometimes we just observe or, or, um, You know, kids can observe things and maybe, I don't know, interpret things their own way. And, I don't know, one thing could lead to another. But, yeah, it's not like you were throwing plates around and stuff. No, not at all. Like other stories. You know, that could really, you know, cause fear.

Elaine [30:09]: Yeah, she definitely just wouldn't miss me warping. You know, like, okay, I got to either, I need to remove myself or the animal needs to be removed.

Adeel [30:20]: Yeah, yeah.

Elaine [30:22]: Yeah, so.

Adeel [30:24]: Okay, and then, yeah, I mean, I guess, actually, yeah, going back to, you know, most therapists and doctors, yeah, a lot of people just don't get it. Do you feel like, are they, you know, it's easy to say that people just don't get it. I'm just curious if they are, you know, thinking that it's part of something else, like anxiety or OCD or something like that. That seems to be what a lot of people just assume that it is, and They just assume that, oh, just use one of those tricks or techniques to kind of get over it or snap out of it. Do you ever get that kind of feedback?

Elaine [30:59]: Yeah. I mean, I've worked with a therapist since 2013, the same therapist the whole time, which is great. And she's wonderful. And to me, she's almost like a mother figure to me because she's a little bit younger than my mom would be right now. because my mom and I did not have a good relationship and my stepmother and I didn't, did not either. Like I really didn't have a strong, you know, mother figure in my life, but yeah, so she's, she has worked with me for a long time and around like more of anxiety and depression and understanding, you know, my behavior as an adult based off of my childhood experiences. And, you know, kind of my go-to reaction of everything being like, like I did something wrong or it's my fault because of, you know, just growing up with a mom who was just so erratic and not supportive. And so, so yeah, so I've definitely, you know, been working on that and so with the misophonia it's like you would think that being that close to somebody for so long as a therapist like that would be like one of the main things that we've talked about but honestly hasn't i think it's because i guess there's so many bigger issues i guess and so but i did mention it to her because again like this podcast i feel like is so um freeing to me as well because it's something that i feel like i've hidden for so long and that all these people are being open about it and talking about their experience that's the whole point of it this whole point of why i do this because most of us feel like this is this is the dumb stupid thing that i should not be worried about

Adeel [32:42]: Yeah. But it's actually just as important and, you know, can point to the things going back that you experienced growing up and that your, you know, your family experienced in previous generations. Yeah.

Elaine [33:02]: Yeah. And I think part of it, too, for me was almost like it's to me, it's like a scary thing as well. Like the. the rage part like because it's like again i'm just such a calm like chill easygoing person but yet when some of these sounds happen i just feel like it's like almost like the incredible hulk or something like turning into something that's just so angry and enraged that to the point of like violent kind of images will come in my head about ending that sound but that's not who i am as a person so i guess that's why it's been really hard for me to talk to people about it because i think without understanding it or having the perspective of it someone could possibly be like wow this is like a really violent person who's a danger and maybe perhaps shouldn't have children or shouldn't have pets because they're so have these horrible ideas you know based on sound and so for to me that part is just kind of frightening I guess in terms of that judgment piece for people to to openly talk to them about it but again like listening to the podcast has been so wonderful because like I can tell just listening to every person's story that they're just kind souls you know all these people are just wonderful kind people who who aren't violent right like who aren't like um people that would do anything horrible but yet this trigger is something that just can create this feeling you know that's just so overpowering um but anyways so i guess that's another piece of try of not talking to many people about it even the therapist because when i didn't mention i didn't mention it to her and she's like oh I'm not that familiar with that, you know, and that's, you know, I'm glad she's being honest and not saying, oh, I know all about that and let's just fix it this way, you know.

Adeel [35:00]: Right, right.

Elaine [35:02]: But yeah.

Adeel [35:03]: What kind of, for the other, I'm just curious, what kind of therapies and modalities does she use for, you know, some of these other more traditional things?

Elaine [35:13]: Yeah, most of it's kind of just that behavioral, you know, cognitive therapy in terms of trying to change your thoughts thinking patterns you know when you get into a situation because again a lot of you know my initial reaction to things is i'm doing something wrong i've upset this person or i've caused this problem and i need to fix it and it's always based on me versus you know changing my perspective of okay, what are the alternatives here? Like what else could be happening in this situation? So it's, so you don't turn it, you know, inward.

Adeel [35:51]: Spiral. Yeah.

Elaine [35:52]: Yeah.

Adeel [35:53]: Has that, has that helped? Yeah. I mean, it sounds like it's been pretty effective because you're, you're still, you know, you're still seeing a person, seeing this therapist and it seems to be, oh, for a reason you haven't left the therapist. So I'm assuming there's some progress there.

Elaine [36:11]: Yeah, definitely.

Adeel [36:13]: For the non-Misophonia stuff, yeah.

Elaine [36:14]: Yeah, no, definitely. You know, when I get into situations, at least now I can stop myself and say, okay, like, if her name is Chris, I'm like, if Chris was in this situation, what would she say to you? Like, okay, let's stop and think and what... what's the alternative here and how can I frame this differently? So yeah, it's, it's definitely helped, but there's a way long ways to go.

Adeel [36:39]: Yeah. And is there any, is, has, has she, has there been any kind of looking back at trying to process or reprocess the past in any way? Like, Oh, definitely.

Elaine [36:50]: Yeah. I mean, that's, that's our two biggest topics is my, you know, my mom and growing up with her and she always brings it back. Like, okay, well, you know, why do you think you're reacting this way? Okay. Right. Because it has to do with, you know, X, Y, and Z in your childhood. And then same thing for my relationship with my own daughter, because that's our probably second biggest topic. is because, you know, I don't want to have that kind of relationship with her that I have with my own mom.

Adeel [37:19]: Right.

Elaine [37:19]: Like it's so important to me to have a good relationship with her that I think I take things too hard or too sensitive about certain things. And, you know, the eggshell thing, too, is tough for me. walking on eggshells yeah because i know like things that bother her so then i get like anxious about bothering her so it's like almost like this i don't know this it's just like hamster wheel of like like for example like i know yawning really bothers her and she'll say things to me like oh that's like the worst sound i've ever heard in my life is you yawning and and for me if i get nervous i yawn a lot So like, which is interesting. And I've looked that up and that actually is like, it's not just me. Like that's an actual like coping mechanism for anxiety. Your body will yawn, which I was like, okay. So it's like me. Yeah. So, so then it's like, okay, so I'm on eggshells that I'm going to trigger her. And then which causes me to yawn, which causes to trigger. So it's just, you know, that's tricky balancing that. And again, the Lisa Loeb episode was great to listen to, to hear how, you know, it sounds like she's got the same thing going on with her children. Like you have the perspective, you understand, which makes you even more aware of it, I guess. So then you find yourself being even more careful. I don't know.

Adeel [38:39]: Yeah, it's a double-edged sword. You think, oh, I mean, you would think that you can help, but it's not quite that simple. And actually, that reminds, you know, that brings up a point of... the highly sensitive people, HSP, a lot of those folks come on the podcast where, you know, people were just kind of like overall just feel things more intensely. And, you know, have you heard of that term? Do you kind of identify a little bit with HSP? I'm curious if your other family members as well might be considered HSP.

Elaine [39:17]: yeah i think i think oh definitely and i think a lot of it has to do with the childhood too of just having to read the room because of my mom you know not knowing is this a good moment or a bad moment and so because of that i yeah definitely just i noticed things in crowds that nobody else notices and i find myself getting anxious about situations of strangers that i can i can just sense an escalation between two people that has nothing to do with me and yeah again i'm like oh my gosh oh i can tell that person's getting upset oh no like yeah and it's like you know like again my husband's like like why like why do you even care and it's like well you Because he grew up with very stable parents, so he just doesn't understand, you know.

Adeel [40:09]: That's interesting you mention that. I don't know if I mentioned that on a recent episode, but yeah, the idea of like... noticing an escalation and and part of me is just like oh my gosh if i can just jump in and like answer like and just like interpret what's happening then we could not talk past you know one another um interesting did you ever uh you know before your mother passed away did you ever um come to any kind of understanding or reconcile or just kind of like be at peace with with your childhood yeah not you know that's a very interesting question so

Elaine [40:43]: Several years before she passed, I decided to break off communication with her because she was very verbally abusive to me. Still, even into my adulthood, she would just, you know, just scream. I mean, she just was a screamer and she would just get so upset about things and, you know, just say very hurtful things to me. Like, for example, she with a paranoia part, like she. and I had gone to like a church thing, you know, together. And then afterwards she was convinced that the pastor sermon was all about her. Like it was, the whole thing was written just for her and that he was talking just to her. And we were talking in the car about, and she asked me what I thought. And I said, no, I don't think so. I, you know, I think, you know, blah, blah, blah. And she said something to me like, well, then your conscience must be dead or something. You know, she would just say things to me like that. And, but then later on, if I would bring up, something like that to try to talk to her about it like after the fact she would be like oh i would have never said something like that to you so you could never so it was so she would be it sounds like like there would be episodes she would be she'd go through episodes where she would like talk through like talk for abusive but um but a lot of the time it wasn't the case like she was pretty normal she would know like yeah she would she would recall it differently so yeah i think it's like maybe i don't like mania maybe we're like yeah yeah you know just you just don't even remember it or like you know she would just get so upset and she'd be very violent and very and then she would act like nothing ever happened so i think um yeah so it's like you can't really reconcile with someone who views the past differently than it actually happened yeah so yeah but then you know when she um she went into cardiac arrest and she was on life support for a while and i talked to my brothers and i said you know i really want to go see her and and so when i did and she um came off of life support actually and when she saw me it was like almost something uncanny. It's hard to explain, but it was like she had forgotten everything. It's like she had forgotten any kind of strife between us. And she was so loving and so caring and so happy to see me that I just, I couldn't believe it. I just, it was like a gift really. So for her, you know, it was about two months before she passed away that I was visiting her every week and you know, just, talking with her and checking in on her and you know telling her that i loved her and um yeah and she was just so kind and happy for the whole last two months yeah and so i talked to my own therapist about it she said there is this kind of phenomenon about people with mental illness towards death that it's almost like It's I don't know how she explained it, but almost like it's like a lapse of mental illness close to death. It's interesting. So she's just wondering if that was part of it. I don't I don't know. But to me, it was really like a miracle because so now I have, you know, I got a few months with her at the very end. It just was very loving. And yeah.

Adeel [44:08]: Was that overall, I don't know, not to dwell on too much, but it was that, uh, did you come away from that feeling good about it or just being like, Oh, why, why couldn't I have had those two months for the, my whole life kind of thing, you know?

Elaine [44:19]: Yeah. Yeah. That's a great question. Yeah. I think, you know, just like the stages of grief, you know, you go through different things. And so I felt like I was grieving multiple things, you know, and the therapist told me that too. It's like you were, you're grieving your mother passing, but you're also grieving. not having a mother like when you were a child right like you're not having a typical mother-daughter relationship so it's like and then i was also grieving that i wish that could have continued you know the last couple months and like why like you're saying why couldn't we just continue to have this bit of a relationship. So yeah, it was, yeah.

Adeel [44:57]: Yeah. Speaking of, speaking of grief, there is, uh, you know, people have mentioned, uh, the idea of misophonia grief, which is the grief of missing out on events due to, you know, running away from sounds and whatnot. Um, which, um, I mean, probably continues for a lot of us living as we, especially if we have kids and whatnot, like what are we missing out on in terms of family functions and things like that? Um, yeah. I'm curious, actually, you mentioned brothers. I'm curious if any of your siblings developed any kind of sensitivities or did they notice yours growing up?

Elaine [45:35]: Yeah, that's interesting too. So my brother, Joe, we're only two years apart. So he's my closest brother. All my other brothers are older, significantly older than me. But he's the one who actually called me up one day and when the documentary came out, And it was so funny. He was saying to me, you know, he goes, I just watched this show about people and how they, you know, they have like a physical reaction to a sound. Like, he's like, could you imagine having like a physical reaction to a sound? And I was like, yeah and then after i got off the phone with them i was like kind of like okay was that his like odd way of being like i think you have this and you should watch this but i'm not going to tell you i think you have this so um you know by just acting surprised that this exists so um so that's how i first even uh yeah was that the 2020 documentary or no i feel like it was earlier than that um so maybe it wasn't necessarily a documentary but just a about people who are experiencing that i can't remember exactly what it was but um but yeah it was so i i started to watch it but i couldn't finish it because it was just so depressing and um you know just i don't know it's just so hard i guess like you're talking about that the miso um grief you know sometimes i i do find myself kind of getting into a a dark place of

Adeel [47:07]: end up like feeling like I'm cursed you know like I try to stay positive but um yeah like why why do I have to have this is so right yeah yeah that documentary maybe is it the is it the movie that quite pleased documentary that I'm not sure yeah okay yeah yeah no because I only I don't want to draw on it because that yeah that that one in particular I think it's about an hour and a half and yeah and I could not sit through it It took me several viewings to kind of finish it because, yeah, it's just so emotional. And that was before I started the podcast. So just listening to somebody talk about it was just very, very heavy. So I totally get that. And so your siblings, these were from your natural mom? Yeah. Were they all experiencing the same? Obviously, we're all witnessing the same kind of chaos that you were.

Elaine [48:00]: yeah they were and and actually we have a kind of a unique situation in our family as well that my middle uh brother was actually adopted out of our family and i didn't meet him until i was 17 and because my mom um couldn't handle him um so he had like severe adhd and she just could not raise him and she was very physically abusive to him and eventually was like he has to go and so he ended up being in foster care and being adopted and yeah so honestly I always tell him it's just it's a miracle and kudos to him for being a functioning adult because she got the worst of you know our mother and then not only that but then got taken away and um so yeah so they all yeah i don't know it's in my oldest two oldest brothers you know they say that um she was fine up until like the time around i was born which was not a great thing to tell a child um yeah well i think you know from talking to the therapist she was talking about how like schizophrenia a lot of times it kind of the onset can be like early 30s so um i think for my oldest brothers they you know were with her for their childhood during her good years i guess you could say before the onset so how do they do they do they know i mean it sounds like you you hide things but i'm curious if if they know about your misophonia no they don't no i don't really um yeah talk about it talk about it with that yeah um i'm curious so um then you're so i guess so is your husband a trigger to your to yourself and your child um you know yeah sometimes he is you know um more to my more to my daughter than to me you know she'd be like if he like burps or something she's just like oh my god you know it's like the end of the world

Adeel [50:11]: Right.

Elaine [50:12]: You know, she over, you know, just gets upset, but yeah, but not so much for me. I don't think, no, but definitely the dad, which is interesting, you know? So, so when my stepmother passed away, which was a year before my mother passed away, um, you know, my dad just went into like a depression because it was really hard for him. He doesn't like to live alone. So we ended up selling our house and, and moving into my child's home with him so that he has company. And it's just interesting because now like we try to have the family meal, you know, which is hard, but, um, he's definitely like, I like a trigger for me, like him eating over anybody else. So I'm so curious about that as well, because it seems like that's, um,

Adeel [50:57]: common you know like the dad like i wonder why but um yeah yeah no that's i wonder yeah i mean yeah yeah i mean i guess i guess yeah dad's generally probably if it's between the dad and the mom they're less like the dad's less likely to care about how they're sounding right maybe that's stereotype but um um yeah that's yeah that's that's interesting um needs to be more research on that but um yeah um have you i guess have you bumped i know i know you've kind of like hidden a lot of stuff but have you bumped into other people who've mentioned that they have something like this well not really um except for my daughter i mean i did you know so the poem that i wrote um which is a j2 so i'd

Elaine [51:44]: do a lot of like poetry, open mic nights, you know, like it's kind of my creative outlet and do writing workshops and someone at the writing workshop said, you know, you should, if there's something that's really hard for you to write about, that's what you should be writing about. So that's why I attempted for the, the poem on misophonia. And when I read it out loud at a poetry, you know, open mic or whatever, the friend that I typically go with, I hadn't really told her about it, but then I read the poem. So of course she was like, well, what's that all about? You know? So I kind of explained it to her and she said something, she's like, Oh, that's interesting. She goes, you know, cause she's a teacher as well. And she said, you know, when kids like click their pen, she's like, Oh, I have to make them stop. I can't stand with, you know, kids click their pen, you know? And we didn't really get into like in depth like okay there's a difference between like something that's annoying versus something that has that fight or flight where you just feel like you're losing your mind you know the difference but we didn't really get into it too much but again i think for me it's like the again like i talked about before like that fear of like i don't want people to think like if i try to explain it like that i'm like a violent person you know Um, so that's why I feel like that's my biggest fear, you know, but yeah.

Adeel [53:01]: Yeah. I, yeah, I guess. Yeah. Yeah, I mean, yeah, you're right. I mean, honestly, that's why a lot of us kind of keep things bottled up is that we're all kind of surprised by what we're what goes on in our in our head. But yeah, no one's no one's ever acted out on stuff. It's that feel like it's it's. But it's it's yeah, it's one of the most confusing things I can imagine. I mean, growing up, it's got to be super confusing because I just don't know how to deal with these with these thoughts. I guess, yeah, we're coming up to about an hour. Do you want to maybe, you know, be cool. Do you want to maybe, I know I'll have links to the poem and whatnot, but would you be up for just kind of reading it?

Elaine [53:48]: Sure, yeah. So let me, I can just, I don't have it right in front of me, but I can pull it up quickly.

Adeel [53:52]: Oh, yeah, sure. I kind of put you on the spot, so I'm sorry about that. No, that's okay. But I think it's so powerful. I love it because it's not, you know, there's lots of great poetry, but this was a little bit unusual because it was just kind of written in a more, maybe a modern format.

Elaine [54:10]: Yeah, yeah.

Adeel [54:11]: And I think it's interesting, especially as you've kind of like give it some context, so.

Elaine [54:16]: Yeah, definitely. Yeah. So let's see here. Okay. So there it is. All right. So the misophonia. She said her mind attracted the lone cricket rubbing outside her slightly cracked bedroom window. The black crow calling from a pine tree branch over her backyard cosmos. The summer fan clicking underneath a word only detected by her. Like a network of mycelia webbed from her mind to the sound. This pulsing and electromagnetic search and capture escalates. The tendrils lick and embrace with exponential arms and seek out that sound again, inviting even a deadened sound. Just the shape-shifting and repetitive movements will feed the brain's hunt. A bathing cat, a repeating riff, a dripping sink. Each lick, finger-pick, and wet ceramic kiss confirms the rage, and the visuals swarm in as the body tries to escape. lacerating, severing, shattering. The misophoniac holds her breath while her hands press each tragus until the cartilage can bend no further, waiting for the images to pass, begging the sounds to fall into a black hole.

Adeel [55:30]: Yeah, amazing. Yeah, what led you to write that?

Elaine [55:39]: So, again, it was from the person who was doing the workshop and said... Oh, right, right, right, right. Yeah, she said, you know, something that you know would be really hard to write about, that's what you should be writing about. And I thought, well, misophonia is definitely something that would be hard to... Yes, yes, yes, yes. to write about um yeah and it's interesting that reading that poem kind of brings me to also so my husband is a musician and he plays in a in a band that does a lot of time changes and so he's always practicing um going from time change to time change right the measure yeah and so he's always practicing and i love you know like i love music and i love his guitar i love to watch him play but when he's practicing and he does the same thing over and over and over and over that's where i'm like oh my gosh i have to leave like i can't i can't um do that you know and um so anyway it's like that's just one of those things that was in the poem to the riff like just that over again but um and it's hard it's so hard because it's like i love music and i love him and i love to watch him play and But yet that if he's just practicing something repetitively, like I just I have to leave. Like I just yeah. So it's so frustrating that, you know, I don't know.

Adeel [56:58]: Yeah, no, it's it attacks. It attacks the things you you kind of love the most, which is ultra confusing on another level. Yeah, Elaine, I mean, yeah, like I said, we're getting up to an hour. Thanks for reading that. But anything else, I guess, you want to share with people who are listening?

Elaine [57:15]: Yeah, I mean, it's just I just want to say thank you to all the people so far who have done this. And thank you to you for starting and to all the future guests. And it's just it's really has been life changing for me to hear that just other people's experiences and all these beautiful people. Like I said, just such kind souls, you know, talking. about something that's like kind of like an open wound you know what i mean then it's really it's to me that's therapeutic so i just appreciate everyone who's who's been brave enough to do that too because i think i do think there's a part of it that is uh you know being brave at the same time to share so so yeah thank you elaine glad you found the show and shared so much today

Adeel [58:08]: If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at missafonipodcast.com or go to the website missafonipodcast.com. It's even easier to just send a message on Instagram at missafonipodcast. You can follow there. Facebook at missafonipodcast. On Twitter, it's missafonishow. Support the show. by visiting the Patreon at patreon.com slash mrfunnypodcast. Theme music as always is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [59:22]: you