Roz - Generations navigating misophonia together

S1 E21 - 4/2/2020
The episode features a deep-dive conversation with Roz from Florida, who discusses her lifelong experience with misophonia and how it has impacted her relationships, especially within her family. Roz recalls the exact moment she realized she had a problem at seven years old, triggered initially by her father's repetitive actions linked to his OCD. This sensitivity to sounds snowballed over the years, affecting her interactions with others and her ability to conduct daily activities comfortably. She narrates how, decades ago, her children recognized her condition through a New York Times bestseller, 'Too Loud, Too Bright, Too Fast, Too Tight' by Sharon Heller, which was a pivotal moment in understanding her misophonia. Roz's story also brings in her daughter, Linda, adding a multi-generational perspective on living with misophonia. Linda shares her own triggers and coping mechanisms, reflecting learned behaviors from her mother. The episode also discusses Roz's strategies for managing misophonia in work environments, specifically choosing jobs that allow for environmental control, and her use of earplugs and modulated music suggested by an occupational therapist. Roz touches on the challenges of dealing with misophonia in a relationship and as a parent, highlighting the significance of communication and coping mechanisms to mitigate triggers. Overall, this episode offers insight into the enduring and evolving journey of living with misophonia across generations, emphasizing the importance of awareness, understanding, and adaptation.


Adeel [0:02]: Welcome to the Misophonia podcast. We're on episode 21. My name is Adeel Ahmad, and I have Misophonia. I'm at home, as usual, this time locked down in a coronavirus world. Hoping you're all safe and healthy staying at home. This week's conversation is with Roz from Florida. I recorded this long before coronavirus. Roz actually has a couple of grown kids. And we talk about how it is raising a family. We talk about her childhood. This is obviously quite a bit before misophonia was a thing. And actually one of her kids calls in in the middle of the podcast. So as a kind of a surprise. So it's interesting to get both of their takes. So, hey, I've got a whole bunch of new recordings that will be starting in May. We'll actually be starting new interviews in May. Now, most slots, I think, are booked, but this was all booked before coronavirus hit, and I'm going to be confirming, making sure folks are still available. I would love to speak to everybody. So if you're interested in being on the podcast, keep an eye on the website. There is a link to be a guest. And if things get canceled, there might be openings. And I'd love to talk to you. All right. Now, here's my chat with Roz. Roz, welcome. Welcome to the podcast. Good to have you here.

Roz [1:26]: Thank you. I feel honored.

Adeel [1:29]: Well, honor is mine. So, yeah, you start with kind of a little bit about you, like whereabouts are you located?

Roz [1:39]: Well, I live in Florida right now. I live on the Gulf Coast, but I'm originally from Michigan. So I've been out here in Florida for 18 years.

Adeel [1:47]: Cool.

Roz [1:48]: Okay. Yeah.

Adeel [1:50]: And you mentioned earlier in an email that you have some kids. So I'm assuming, so are they living with you or they're older kids?

Roz [2:01]: No, my kids are older. They're 50, 52 and 54. Gotcha.

Adeel [2:06]: Okay. Yes. So then how you've, you probably had misophonia for a little while or have you? Like what's yours if you remember it?

Roz [2:17]: yeah I I do remember the exact moment it started know that I realized there was a problem was probably about seven years old yeah and I was and my mother was pointing out to my father had OCD about we didn't know what it was that and he used to have a habit of shutting lights off and on or clicking handles or putting his partials in and out of his mouth or shutting lights or everything, tapping his hand. Everything was these repetitive motions that I never noticed. But my mother used to point them out to me how it drove her crazy. And at first, it's very interesting. It was only my father, the sounds that my father made, but it snowballed. And every year, more and more things came into play. First, it was just my father. Then it was at school, kids' pencils tapping on desks, people chewing gum, people shaking their foot. Then it became people chewing, people eating. It just kept getting bigger and bigger and bigger until when I would say anything, people would say, get over it. You're so paranoid. What's wrong with you? And people were always, yeah, you've got a problem. And I felt I did have a problem. I mean, you know, I think a lot of us, we think there's something wrong with us. What's wrong with us? So it wasn't until maybe, oh, 30 years ago, I was teaching some classes in adult ed. And I always and I was I used to have to warn people that they can't chew gum or tap their pencils in my class. And I was saying I have this sensitive hearing thing. And one of the girls came up to me and gave me a set of earplugs, which never occurred to me. And that was like the first saving grace I ever had was that that I didn't have to suffer, that there was a way to buffer it a little bit. But I but people still thought there was something wrong with me. And so did I. you know um but i will tell you there's a book i pulled out of my bookshelf yeah please um this had to be this had to also be maybe 40 years ago i mean because my kids are in their 50s so no maybe it was about 30 years ago the long time ago a book came out on the new york times bestseller list my kids were living on their own they were young they were living on their own i was suffering from this awful thing everyone would be mad at me all the time and They sent me this book in the mail called Too Loud, Too Bright, Too Fast, Too Tight by Sharon Heller, PhD. And it says on the front cover, what to do if you are sensory defensive in an overstimulating world. And they had a big write-up in the New York Times and my kids read it and they sent me this book and said, this is you. Like, this is what you have. And so it was the first time I read anything or saw anything where there was other people that had what I had, though I was still in the dark of what, you know, I mean, I was still very much alone with it, and nobody else believed it except my kids. You know, they they used to they suffered with me for years because I mean, you know, and it's funny, the noises are selective to like if they were popping gum, I would my gut would wrench and I would get so angry. But if I yelled at them for popping gum and they said, Mom, we're just snapping our blue jeans, then it didn't bother me. I mean, it's a very crazy.

Adeel [5:41]: So it's kind of context. Yeah. Yeah. I haven't thought of it that way, but there is. Yeah, there does seem to be a context that that associates itself with it. Hmm. Yeah. Yeah. Yeah. Go on. Sorry.

Roz [5:56]: No, go on. What about?

Adeel [5:57]: Yeah, no, I want to put the, well, I'll get the info. I'll just Google and get that info because that's fascinating because I've heard a lot of, a lot of people hear about it. Like they get a link or they get a book and their friends or, or family says you have this, but it's almost always just within the last five years. So that's fascinating that there is a book that was written 40 years ago. It might, it might be more general than me. So, but it's still interesting. Somebody had a glimpse of it.

Roz [6:26]: One of the copyrights is 2002. Oh, okay. But I think it goes earlier than that. It was redone a couple of times.

Adeel [6:34]: It could be a later edition, yeah.

Roz [6:36]: Yeah. Interesting.

Adeel [6:38]: Well, I'll get that to give in the show notes.

Roz [6:39]: Yeah, it's just amazing. But it didn't get into what I found out later, which was only five years ago when I got a real enlightenment. I used to work with the – I've worked with the developmentally disabled community for many years as a social worker. And I always saw that kids with autism, you know, they used to have to be rocked and soothed. And I knew they had sensitive to noise. I never related. I mean, I don't have autism. But I started looking and seeing and asking questions. And I found out that, you know, occupational therapists helped them. And that these kids who had these sound sensitivities got help from occupational therapists. So I went on a search about 10 years ago, 15 years ago, to find an occupational therapist who understood this or knew anything about it. And I couldn't find one that would work with adults.

Adeel [7:29]: Yeah, I was going to say I'd be shocked if you found one.

Roz [7:32]: But I did. Five years ago, I found one in Sarasota who has misophonia and who specialized in adults. And she went back and trained to work with adults. And I was blessed enough to find her and began working with her five years ago. And she helped me tremendously. But we had all kinds of things that we used. I mean, I have a headset that's a special headset with special modulated music that first I used to have to use CDs. But then they became available, you know, to download onto your phone or your iPad. And I would listen to these special sounds that would play. I would listen to them 30 minutes twice a day. And she had all this paperwork that I have here, too, that how it would help the nerve endings to the brain to calm them down so they're not so fiery, so they're not so sensitive. And when I was using it regularly, it helped. Plus, I used a brush that she used to have me rub on my arms to self-soothe. And she used to have me use a big ball, one of those big, huge balls to sit on when I felt really intense stress from the noise. that I would sit on there and self-soothe. So there's, you know, but my biggest thing that I think is most important for me is I can't expect the world to revolve around me and my sensitivities because I have the visual one too. Go to an airport and you watch people shaking their legs or, you know. yet, twirling their hair or whatever they're doing. I mean, I have put sunglasses on, I close my eyes. I mean, it all go. But I've learned to stop being angry. I used to be angry. I used to be angry at the dogs barking, angry at the lawnmower on Tuesday that did the lawns in my neighborhood for hours on end. I've learned that I have to find a way to live in the world. And so if you come to my small little villa that's 1200 square feet, I have four box fans. you know, and the box fans I use as white noise. Sometimes I travel with them. But I find ways, when the dogs are barking or noise disturb me, I find ways to, because as soon as I can block out a sound, because I have, you know, that overstimulation, that, what do we call that, sensory overload, you know, when that starts to happen to me, if it's in my house and there's too many noises going on, I instantly... calm it's almost like taking a drug when I can block out everything and just hear one sound that I can handle but and when I'm away I always have earplugs in my always have earplugs in my purse but you know there's a lot of extremes people like me go through I drive by myself most places because if there is overstimulation you know nobody understands but I mean go to the movies with me and there's I have to be honest with someone and I say look You're going to go to the movies with me. I have this thing about not noises. You know, I don't make a big deal about it, but I said, I, I have a hard time sitting next to anyone who's eating or eating popcorn. So, you know, if that's your thing, probably wouldn't be good if we go to the movies together. And I have never had anybody say, as I say, I don't need to eat during the movie, but I've been known to change seats in the movie six or seven times.

Adeel [10:53]: And somebody said, we understand that. Yeah. We understand that.

Roz [11:00]: It runs my life.

Adeel [11:03]: Do you tell people, do you always tell people, even friends, that, oh, I just have this sound thing? Or do you, like, give them a few links before you meet up and make them research?

Roz [11:16]: Well, I actually bought the, you know, the Miss Ophinia Society actually has these wonderful little business cards. that actually says on there the links to the website and on the other side it says I suffer from you know this thing called misophemia where I have a cute sensitivity to noise I'd like you to know more about it or something and you turn it over and it's got the link so I will give that to people that know me and I'll say this will explain why I'm like I am you know and I tell people it's a neurological problem I was born with it it's not my fault you know right it's like I used to think it was my fault But I don't go around telling the world because there are those people, and I've learned that when you tell certain people, if you're not careful, they will make the noise intentionally to aggravate you.

Adeel [11:58]: Oh, yeah, we know. Yeah, it's not worth the risk sometimes. Yeah, it's not worth the risk when you can just kind of go home and turn on those box fans.

Roz [12:10]: I turn on the box fans. I leave. You know, there's like I do what I need to do. You know, I try not to let it make me angry.

Adeel [12:18]: Yeah, and that probably comes from experience, being able to control your environment a bit more. But when you had kids living in the house, how was that?

Roz [12:30]: It was not easy for my kids, I can tell you that. Because I was always saying, you're talking too loud, you've got the radio too loud, you're chewing too loud, the dog's breathing too loud, the dog's licking herself. I mean, there was a period of time, I remember one time my husband and my two kids were all sitting in the family room watching a movie, and I came in to sit down to be with the family, and the dog decided she had to clean herself, you know, that licking. And so I yelled at the dog to get out of the room, and what happened is my husband said, come on, kids, and they left. They all walked out of the room and took the dog with them. I was like such a bad person.

Adeel [13:04]: And was that a common thing? Were they rarely kind of understanding?

Roz [13:09]: No, nobody understood. Because I didn't understand. I thought there was something wrong with me too. But I couldn't stand it. I actually get physical pain from noise if I can get away from it.

Adeel [13:20]: Yeah, yeah. But they eventually came around and saw some links somewhere. But I guess, did their friends, did friends of the family, yeah, how did, like, you know. people come over, it was similar kind of thing. Like you had to sit somewhere else or it was just, you were just kind of tense all the time.

Roz [13:39]: Well, if there was, you know, the funny thing is if there's a lot of noise and it's a lot of people and it's in my environment, like if I have control, that's the big thing.

Adeel [13:47]: Yeah. Cause it's fight or flight. So right. It's fight or flight. So if you're, if you're kind of in control, then your brain does not think that somebody is going to barge in and kill you. So.

Roz [13:58]: Right. So if I'm in my house and there's a lot of people, And I have control. I can walk out of the house. I can do things. If I'm in a theater, which my kids are always amazed that I can go to the theater and sit in the center, but I bring earplugs. But there's always those rare times when someone's breathing too heavy next to me or chomping on a candy or chewing gum behind me. And I already start to feel the body change and the sweat breaks out and the anxiety starts to flare. Sometimes it causes me to get stomach aches. And the only thing that I have to do when I'm in those situations is when I put two earplugs in, let me tell you, I'm sitting there watching lip reading at this point.

Adeel [14:40]: Yeah, yeah. Yeah, so I'm wondering because earplugs to me just seem like they kind of would reduce the sound a little bit. But I guess there are some that really block everything out. Is there any special brand that you got or like fitted ones? I do.

Roz [14:55]: I do. I don't have the name in front of me. I get them off of Amazon. And they're for people who are, you know, who shoot guns like police and, you know, like people. I get the highest decibel ones. And when I put one in, I can actually muffle like people to the left of me if I put it in my left ear. Like if I'm in the theater and someone's eating to the left of me and I put the left one in, it subdues it. But if I put them both in, I actually am reading lips because it blocks it out that much. And then they're in my purse all the time. And I'd be happy to look them up on Amazon and then send you the ones that I get.

Adeel [15:30]: Yeah, that'd be great afterwards because I actually want to try some more earplugs out because I don't always feel like putting on some music or whatever. Or I want to sit in a movie theater and concentrate.

Roz [15:45]: Well, in a movie theater, it's so loud. In a movie theater, it's so loud that when you put two earplugs in, you can still. And then I just don't push him in as deep. You know, you learn.

Adeel [15:54]: Yeah, right.

Roz [15:57]: It's such an art.

Adeel [15:57]: It's going to mold your body. Yeah, exactly.

Roz [16:00]: It's such an art. But, you know, I really think, you know, I have Crohn's disease. I was diagnosed 40 years ago. And I do believe that that came from this disease, this addiction, this affliction. Because all through school, I was so stressed. I couldn't take tests without stress because I didn't know. So people would tap their pencils or chew gum or bang their foot. And I never could screen out. Like, I had no screening. I could hear five or ten sounds all at the same time. And it used to make me sick to my stomach. So it's a horror. I wouldn't wish this on anybody. I don't know if you saw the movie Quiet, Please.

Adeel [16:37]: Yes, I own that. Yeah. Great movie.

Roz [16:39]: Okay. Yeah, I own it, too. Well, when my kids saw it, they really understood. But I cried when I watched that movie.

Adeel [16:45]: I couldn't watch it. I've said this before. Yeah, I couldn't watch it once sitting because of that. It was just too much at once.

Roz [16:52]: It was a lot. It was a lot. But thank God somebody, you know, it's coming out. But still, people, you know. I don't make this a habit of talking to strangers or tell people, but if I'm in a theater and somebody starts kicking my seat, that's like a no-brainer. I turn around as politely as I can, and I say, you're probably not aware that you're kicking the seat, but would you mind watching it? And the people are very nice. Rather than turning around and giving them the dirty look and saying, it's how you approach people. Yeah. But, I mean, I'm always on guard. You know, I'm always watchful.

Adeel [17:34]: Yeah, and, you know, sometimes you just got to get up and move. When you got up and moved, what did your, like, family or friends think? They just kind of got used to it?

Roz [17:43]: When I would get up and, you mean in the movie theater, like for instance?

Adeel [17:45]: Yeah.

Roz [17:46]: I warn people. I don't just, if I'm going to the theater, the movies with somebody, I warn them about how I am. Yeah. So I say, you don't have to move, but if something comes around me that bothers me, I need to move. So I just want you to know up ahead. And they say, no, I'll move with you. They just think I'm weird, but you know.

Adeel [18:03]: Yeah.

Roz [18:04]: Some people call me interesting. Yeah.

Adeel [18:06]: I don't want to know what they think inside, but I'll go with interesting. for me too yeah you can call me anyone can call me interesting so yeah rewinding uh rewinding a bit too okay so yeah it's very common uh dad being uh an early trigger um yeah what um how did how did that snowball again? Did that go into visuals right away or did it start to go to other members?

Roz [18:31]: No, there were no visuals. It started with family. First it was my father, then it began my mother, the way she chewed her food. That's when the... mouth sensations started happening like I started noticing chewing sounds before that I didn't notice chewing sounds so then I couldn't eat with my mother and I couldn't be around my father when he tapped so I began isolating a lot so which made me a very isolated person as a child not not understanding what was going on so what did your parents what did your parents do for you at that time then nothing yeah it wasn't even discussed I never said, Dad's bothering me, your chewing annoys me. I mean, in the way I grew up, you did not say that.

Adeel [19:12]: No, no, no, yeah.

Roz [19:15]: You just removed yourself, and nobody bothered when I removed myself. I started eating in my room as a young child because I couldn't eat with anybody else. Even the sound of dishes clanging and spoons clicking and all that stuff, it began in the house. It wasn't outside of the house until junior high. And then it began.

Adeel [19:36]: Yeah, all the craziness that happens in junior high and high school.

Roz [19:41]: Then it filtered into school, and then it became really bad. That's when I started getting severe pain in my stomach, and that's probably when the Crohn's disease erupted, but I didn't know it for a long time. And again, nobody paid attention to me, you know, and I didn't say anything. I didn't ask people to stop. I didn't think that was my right.

Adeel [20:00]: And you weren't even using earplugs at that point. It was just like you were just kind of like naked in the ear.

Roz [20:05]: Oh, it's like being, that's the worst feeling of all. When you have nothing, you don't know what's wrong with you and you have no way to stop the noise and you're stuck in the noise.

Adeel [20:17]: Yeah, yeah.

Roz [20:19]: That's torture. Yep. That's like, that's torture.

Adeel [20:23]: So somebody decided to marry you. That's a weird way of saying it. That is a weird way of saying it. I was trying to introduce that, the whole relationship side of it in a different way. So I hope that didn't sound bad. Who else is there?

Roz [20:40]: I hear somebody laughing in there. Who's there?

Adeel [20:42]: No, no.

Roz [20:43]: It's your daughter.

Adeel [20:44]: Oh, my God. Well, this is a surprise. Excellent. This is the first one we've had with more than two people. Excellent. Excellent. Welcome. Welcome to the Miss 20 Podcast.

Roz [21:00]: This is the first poor daughter who really hated me for all the neurosis I gave to her. I gave her a hard time all her life.

Adeel [21:08]: Well, this is fascinating. We were going to talk about your husband, but screw him. Let's talk about your daughter now. No offense. No offense. We'll get to him later. But yeah, so you probably know what we're talking about here. Yeah, curious to... First of all, what's your name? And curious to hear kind of... And welcome. And curious to hear kind of like... Thank you. How was life growing up with mom?

Roz [21:33]: Well, my name's Linda, and, you know, of course I've known this for years and years, and I can't say I'm immune to it also, to some degree, but maybe not to the extent that my mom has it. But, you know, I just remember, like, being little, and I would snap my pants, and she would... Yeah, we talked about that earlier, yeah. Okay, yeah. I must have come on after that, but yeah, I mean, you know, I mean, I feel bad for her because it's, you know, it's dictated how she has to live on a daily basis.

Adeel [22:12]: And, but at a young age, but though you, I mean, you, at that time you, you obviously didn't know what it was. Um, did you feel like you, did you ever feel like you were doing something wrong? Or you just thought, or it was kind of, it just seemed like she's definitely different than everybody else. I'm just curious what your perspective was as the child.

Roz [22:36]: Well, I, you know, we kind of felt like walking on eggshells because I knew, you know, I knew certain sounds were going to trigger, like I didn't know what it was, but I knew certain sounds were going to trigger a reaction.

Adeel [22:52]: Gotcha.

Roz [22:52]: And, you know, Even today, I know, you know, but I'm more sensitive to it than I was probably as a kid. But here's a funny thing. I was going to say, here's a funny thing about, remember I was talking to you, Adele, about, you know, like perspectives of different sounds. Now, if I chew gum in front of Linda, she gives me the evil eye. But if her son or someone else is chewing gum, it can make the same sound, but it doesn't bother her. Yeah, that's true.

Adeel [23:24]: Yeah, we were talking about context earlier. Yeah, we don't know. Yeah, that's interesting. Some part of the brain probably is like, this is a potential danger and this is not.

Roz [23:40]: I mean, I guess we can laugh about it.

Adeel [23:42]: Yes, yes. And that's another motif that comes up is like humor as a cheap coping mechanism. And so, okay, great. And so you have other siblings in the family? A sister. Okay, gotcha, gotcha. And what was her reaction? Was it kind of similar to yours where you were gathered to always walk in on eggshells? and later became more, I don't know, realized what it was?

Roz [24:17]: Well, I mean, I can't speak for her, but I would think that, I mean, we both know, you know, that she has a condition.

Adeel [24:27]: Yeah.

Roz [24:27]: And that's a nice way to put it.

Adeel [24:29]: Slightly better than disorder.

Roz [24:33]: Yeah.

Adeel [24:34]: Slightly better than neurosis.

Roz [24:36]: You know, it's, it's like when I'm doing dishes, if we're talking and I'm about to do dishes, I'll always say, you know, I'm, I'm going to, you know, be doing dishes. You want to talk later or, you know, I'm going to eat. Do you want to talk later? Because, you know, I know, and I know it can be, cause I, you know, I know it can be, uh, annoying or you know make her stressed out or so you know and and it's not like you feel you know she should we'll just talk later

Adeel [25:08]: Yeah, yeah, yeah. And that's probably about as good as you can expect anybody to react, is to kind of like just be conscious of it and give it some space and talk later. Were you also the one who found the article or?

Roz [25:28]: That book.

Adeel [25:28]: The book, right, yeah.

Roz [25:30]: Was it you or Vicky that found it? That was Vicky. Oh, okay. Yeah, the book that where I finally saw, like, my God, other people had this sensitivity, that one that was called Too Loud, Too Bright. You didn't buy it. Was Dickie that sent it? Yeah, that was Dickie.

Adeel [25:45]: So dad, so your husband... What, so how was he, so you probably, did he notice it before you had kids?

Roz [25:56]: I don't know. You know, the truth is, I don't know if he ever knew or, I was very young when I met him. I was 15 when I met him. We were like high school, you know, friends, sweethearts kind of things. And then we were married young and had kids young. But I don't, I don't remember like in the beginning of my marriage, because I was out of the house where the noise was the worst. I think it was like a relief, you know? to be in my own house okay so no that the house that you grew up in was probably triggering you a lot because your dad oh yeah and so getting out with your with your husband must have been a relief yeah it was a real it was a relief and then then i had kids right away and that was a distraction so i don't think the misophemia was alive and active when i was raising my kids this is distraction is that correct They were a good distraction and I was busy, busy, busy. But then there came a period in time where it reared its ugly head and never went away.

Adeel [26:53]: Oh, okay. So was it something that you were not thinking about as much during those years?

Roz [27:02]: Yeah, during the years when my kids were infants. When they got to be making noises like I couldn't control anymore, that's when it got bad. You know, an infant you can control.

Adeel [27:11]: Yeah, it's fascinating because I just interviewed somebody who got it a couple of years ago as his wife was having their second child. And it was something about postpartum and he had to walk on eggshells to kind of like, it was just a lot of stress. So that's when he developed it. It was kind of interesting. Oh, wow. there's a lot of similarities in these stories but there's some weird differences here and there that's interesting oh no go ahead it's an interesting one You know, it's interesting that there was a kind of, it kind of plateaued or kind of like you didn't notice it as much during those years. And then what, do you know what kind of like brought it back? Stress. Stress, yeah.

Roz [27:57]: Stress, stress, yeah. And the marriage, you know, ended up falling apart years later. And I think the stress of that and the stress of changing my life and, you know, there was a lot of stress and the stress triggered it again.

Adeel [28:09]: Did the misophonia lead to the problems of the marriage or vice versa?

Roz [28:15]: No, I don't think so. I think it was just... Well, you know, I had a personality that was rough. Of course, we all have personalities that are rough. You put two rough personalities together, you know, A personalities, two A personalities equals triple A. You know, I need help. So, I mean, we're still all friends today. Everybody's, you know, very, you know, congenial and, you know, get along very well. But... But, you know, different. I don't remember my marriage ever. Well, that's not true. Because, Linda, were you on the phone when I was telling him about the time that you and Vicki and Dad and Spotty were in the room? And I came in and Spotty started licking herself and I got mad and yelled at the dog. And instead of the dog leaving, you guys left. I wasn't on the phone, but I remember that. I was telling a deal, like, that's how I was treated. You know, it's like, well, if you don't like it, you leave. We'll take the dog and the kids.

Adeel [29:13]: yeah was that a regular kind of uh regular thing that happened where it's just like you know business as usual and then um family family time and then something happens and then to the well i was the one that was always annoyed you know right right so if i was annoyed nobody said poor mom they just got up and you know either i leave the room or they left the room yeah so

Roz [29:37]: Yeah. So, yeah, it wasn't, you know, and then I used to complain about how people ate and, you know, so the dogs made too much noise. They breathed too loud. I mean, truly, they, you know, they did. They breathed too loud.

Adeel [29:49]: But you kept getting, so you kept getting dogs. So did you ever?

Roz [29:52]: It wasn't my choice.

Adeel [29:53]: Okay. Yeah. I was wondering. Right. Yeah. I was wondering that.

Roz [29:56]: was there any discussion about that no there was no discussion yeah there was the dogs and the children and uh you know they were there and and i had to make it work or leave the room yep yeah that gets taxing that gets taxing you know what another interesting thing is i'm going to tell you I used to say, don't tell me if there's something that's going to bother me. You know, when we bought a house once, my husband said to me, oh, you're not going to like this house. Oh, we were going to, there's a basketball net next door. Well, as soon as someone points out a noise that could possibly bother me, it bothers me before the noise happens. So, like, I always hate when that happens, you know, when someone points out something that makes noise where I wouldn't notice it, but once you point it out to me, I'm honed in. And I can't get rid of it then. It's there forever.

Adeel [30:47]: Yeah, your brain is anticipating that something dangerous is going to happen.

Roz [30:51]: Yeah, horrible.

Adeel [30:53]: Yeah, that's why I try not to bring it up with family members who I don't want to pass it on to, quote unquote, if it can be.

Roz [31:00]: Well, I sure passed it on to Linda because... Yeah, so Linda, let's... What are your... Husband is a consummate snacker. And he always likes the crunchy food. But he always knows when he comes out and he's eating crunchy food and I get a look.

Adeel [31:22]: The glare. Yes, we know that.

Roz [31:23]: He says, oh, I need to get a glass of water and dip my crunchy food in water.

Adeel [31:27]: Right, or microwave it until it's completely mush.

Roz [31:37]: Or stop buying him crunchy food.

Adeel [31:39]: Yeah, right, right. That too.

Roz [31:41]: Well, Linda just put up a basketball net, which I always said, oh, that's good because you're in control. You can control when someone's going to use it. That's right.

Adeel [31:50]: Yeah, yeah, yeah, that's true. That's true. Yeah, exactly. Your brain doesn't think of it as much as a fight or flight situation if you're in control. So we're kind of in between holidays here. How are holidays like around you guys? Do you guys have all your own escape routes and coping mechanisms and secret rooms?

Roz [32:14]: Oh, at our house? Yeah, Linda can answer because I live alone.

Adeel [32:19]: Thanksgiving and Christmas. Oh, okay, gotcha. Do you guys not get together for like a big family kind of holiday kind of thing?

Roz [32:28]: Well, no. When we get together, it's a holiday, so that's how I look at it.

Adeel [32:34]: Yeah, because it tends to be, this is like a high stress, like November, late November to late December, it tends to be pretty stressful for mesophones. This would be all the different age groups mixing and eating and being forced to sit at tables and whatnot. So, yeah.

Roz [32:55]: Well, I'm lucky. I have a lot of control over my life today, so I don't put myself in situations that I know can aggravate it, but I am very careful about, you know, it's like it does control my life, but it doesn't control it so bad. I've adjusted, I've adapted, and I've accepted, and I do what I need to do to live in the world.

Adeel [33:17]: So the one area we haven't talked about is work. How do you deal with it in a work environment?

Roz [33:30]: Well, for me, I've always controlled it by having jobs where I have outside jobs, like my office is in the house and I work out of my car. All control.

Adeel [33:41]: Oh, excellent, yes.

Roz [33:42]: Yeah, except right now. I just took a job at the Botanical Gardens, and it's interesting because I'm working in a welcome center with four computers, which usually would drive me crazy, but I'm aware that I'm sitting there around four computers, and I'm on one of them. um and i thought well i'm just gonna deal with it if you know i i know that it's not a permanent job it's for december for the holidays so i'm i know i'm not like you know as long as something i know i can get out of you know yeah then time boxing has come up or if you know that there's like a time limit and yeah after that it's over then it helps yeah but otherwise i always had outside jobs so that's how i unfold it

Adeel [34:25]: Do you ever do anything like that? So you got four keyboards. Is it the keyboards that are the triggers? Like the typing?

Roz [34:30]: Yeah, especially if people have nails.

Adeel [34:33]: Yeah. Do you ever like... Do you like type louder if you hear triggers like that? Oh, no.

Roz [34:40]: I just put my earplugs in.

Adeel [34:41]: Gotcha. Okay. Yeah. Some people like mimicking is like a coping mechanism. So it's like the crunchy food, a sufferer will just crunch louder as a kind of a way to cope.

Roz [34:53]: The only thing I've done, I've done it with music. Like it's really weird. If I go to the gym and they're playing music and I can't block out their music.

Adeel [35:01]: Yeah. You know, with my music.

Roz [35:03]: Yeah. Then I just put my music on louder or like on Tuesdays where I live in this complex where there's 200 units and they mow the whole place on Tuesdays. Tuesdays is the day from hell for me because they start out with the mowing. Then they do the blowers.

Adeel [35:19]: Yeah.

Roz [35:20]: Yeah. And so on those days, I have all four box fans on if I'm home and I wear a headset. I mean, it's an ordeal. You know, if you come to my house and I don't ever invite anyone over to my house on a Tuesday.

Adeel [35:32]: Gotcha. Yeah, because you'll kill them, basically. I'll kill them, yeah. Kill somebody.

Roz [35:38]: I'll kill somebody.

Adeel [35:40]: Interesting. Okay.

Roz [35:41]: Yeah, but I do mimic sounds, you know, music by music. But I don't do crunching, you know, food, because I'd gain 200 pounds if I did that.

Adeel [35:51]: Right. Right. Right. Of course. Interesting. Okay. And Linda, I'm wondering if, do you have kids? Like, are they, do you, do they trigger you at all as well? Similar to kind of how you're triggering your mom?

Roz [36:08]: You know, he triggers me. I have an eight year old. He triggers me more than he used to.

Adeel [36:15]: Okay. So.

Roz [36:18]: But now I'm noticing a little bit more like triggers, like eating triggers.

Adeel [36:25]: Yeah. Interesting. Okay. And you guys have a dog or anything too, or you learned that lesson?

Roz [36:32]: We have a dog.

Adeel [36:34]: You do? Okay. Okay.

Roz [36:35]: Yeah. He doesn't bother me.

Adeel [36:38]: Gotcha. Okay.

Roz [36:39]: Licking and snoring. All good. She's very tolerant and patient.

Adeel [36:45]: Gotcha. Okay. So hopefully you don't have it as bad as your mom.

Roz [36:49]: Yeah. Well, I mean, I've learned lots of coping mechanisms.

Adeel [36:54]: Yeah. Well, that's the one, that's the one good thing about having a, well, let's, let's yeah, let's look for any good, any positive here, but yeah, the one good thing is that you have somebody you can talk to or somebody you can learn from on how to deal with this stuff. So.

Roz [37:06]: Lots of fans in her house, too.

Adeel [37:09]: Yep. Yep. Yep. That's true. That's true. Do you work in an office environment, too? Or are you also kind of controlled? Yeah.

Roz [37:19]: Well, I'm not working right now.

Adeel [37:21]: Okay.

Roz [37:22]: So I kind of come and go. Yeah. I'm not in an enclosed environment.

Adeel [37:28]: That's perfect. Yeah. But you control your environment. Again. Yeah. And have either of you seen therapists or audiologists, which seem to be the go-to doctors, I guess, for this kind of thing? Not that they've figured anything out, but yeah, I'm curious if you've seen any medical officials for this.

Roz [37:56]: Well, I only saw the occupational therapist.

Adeel [37:58]: Right, right, right, right.

Roz [38:00]: What about the headphones and all the... Well, yeah, that's from the... Yeah, that's interesting. That's from the occupational therapist. She's the one that ordered me the headphones and the music that I listen to and gave me all the things with the ball and all the self-soothing things to learn how to cope better.

Adeel [38:18]: Yeah, these things, if you go to an audiologist, they'll fit you with kind of a... hearing aids that will pump white noise in, but I haven't heard, but your therapist, yeah, that's interesting. It has been, was recommending some different stuff I hadn't heard of, like the brush and the ball. That's really interesting.

Roz [38:38]: Yeah, yeah. And the modulated music, you know, very, very interesting.

Adeel [38:42]: What did you mean by modulation? I know you do it two times a day.

Roz [38:46]: Well, it's called modulated music. And what it is is like it sounds like regular music. And you can pick like, you know, nature sounds or symphony, like whatever your taste is. I mean, they're not cheap. You know, each one that I would buy, you know, had a pricey tag on it. But somehow it was made, and you had to have these special earphones that have a way of separating the sounds or whatever. And it really did calm down the sensitivity of the hearing, of the annoyance of sounds. Sometimes it feels raw. I don't know if that's the only way I can explain it. Sometimes sounds feel raw to me. like they hurt they really hurt my insides um but that had calmed it down and then you know if i'm doing things i like and i'm busy and i'm happy and i'm not like you know focused on you know like i'm preoccupied then then the misophynia sort of dissipates but stress brings it on like 200 percent yeah and other than the two of you do you guys know anyone else who who has misophonia have you met anybody else No, I've often wondered about going to that convention, but I can't imagine 800 Missile Phoenix in one convention. I don't know what they would do.

Adeel [40:03]: Yeah, most people can't. It's about 200.

Roz [40:12]: right down to uh the foods that they uh order are like you know hard-boiled eggs soft muffins i'd be walking on eggshells being afraid i shouldn't swing my legs you know well i know nobody except you know linda who you know has a minor version of it and uh And I have a granddaughter who's 24 who says that she has a little bit of it, you know, but not terribly, but she knows she can be very sensitive to certain chewing sounds. But otherwise, I used to, you know, the occupational therapist was like a godsend to me, but she's retired now. But I mean, sometimes if I was having a bad time, I would just go in and talk to her because she understood it.

Adeel [40:57]: well um yeah this is this is interesting it's always uh it's interesting well this is our first multi-generational uh episode so this is uh i'm kind of honored um uh but is there any um yeah any any i know there's a lot of people who have you know are in families that have had to walk on eggshells for a long time anything either of you want to kind of like share from either perspective from uh a child growing up with it or a parent growing up with it with our listeners.

Roz [41:29]: Anything, Linda, that you want to share? About growing up with it? You know, I guess I didn't really know what it was until I was an adult.

Adeel [41:41]: Yeah, it's so different now because now it's, yeah, it must have been so different without the internet back then.

Roz [41:49]: Well, that's true.

Adeel [41:51]: And no doctor was doing anything about it.

Roz [41:53]: We just knew we were, you know, there are certain things that would trigger mom, but not necessarily know why. So, you know, because there was no communication about it, like now we have communication about it. So I know, you know. If I'm eating or she's eating or something, you know, we can just say, hey, is this going to bother you? And it's not a big deal. Yeah, that's so wonderful to be able to communicate about it. Oh, my God. But when we were little, you know, we didn't know. Nor did I. You know, I didn't know either. I mean, I felt like, you know, I just needed the pain to go away. You know, the stress, the horrible feeling that I had inside. I needed it to go away. And the only way it would go away is to stop the sound. you know, so whatever it took, you know, and I wasn't very nice about asking it to stop either. So, but you know, you grow, hopefully this can help younger people that have something like this, you know, where, you know, you can, cause you do have to find a way to live in the world. The world is not going to revolve around people with misophonia.

Adeel [43:01]: No, and it's not worth waiting for some cure or even waiting for the next research paper. We just gotta, we just gotta, yeah.

Roz [43:08]: Yeah, I mean, I had heard once that there was an ear specialist that had hearing aids that caused your, you know, that could help you not hear so good. Like, I don't know what, you know, like block your hearing. I mean, I remember my first husband used to say to me, he sent me to an audiologist when, oh God, when the kids were just starting to make noises that bothered me and he got really angry at me. It wasn't covered by insurance. I think we paid $800 to go to an audiologist for a whole day's worth of tests. And the guy at the end of the day said to me, your hearing is almost like a dog's hearing. Like you hear things people shouldn't hear and you can't scream. I said, well, I know that. What do I do? And he said, well, wear earplugs. That was his solution. So, you know, we haven't come too far. And you know what? The occupational therapist told me that the worst kind of things to wear for people like us is to wear headphones that have things that go in your ear because it actually makes you more sensitive. But I can't wear the ones on top of my ear because I don't like getting my hair messed up with a band that goes across my head.

Adeel [44:18]: Yeah, interesting.

Roz [44:20]: Vanity.

Adeel [44:22]: Well, both of you, yeah, Roz and Linda, I want to thank both of you for sharing your stories.

Roz [44:30]: Thank you so much, Adeel, for having me on.

Adeel [44:33]: See you, Linda. Thanks for joining.

Roz [44:34]: Take care. Thanks, Lindy. Bye.

Adeel [44:38]: Thanks everyone for listening. It was kind of an interesting episode with mother and daughter. Hope everyone again is safe and healthy and hope to speak with you or share a conversation with you next week. Until then, wishing you peace and quiet.

Unknown Speaker [45:21]: you