Mary and Sophie - Generational misophonia impacts and coping mechanisms.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 16. My name's Adeel Ahmad, and I have Misophonia. This week, I'm excited to speak to two guests. Mary doesn't have Misophonia herself, but she's the mother of someone with Misophonia. She has become extremely passionate about the cause of Misophonia awareness and understanding Misophonia to the point where she's working on a book about it. And it's going to be incredible and extremely moving. For this conversation, she has also brought her mother-in-law, Sophie, who is 87 years old and also has misophonia. So we get her perspective on misophonia going back, obviously, many, many decades, right up to today. And her very robust dating life, believe it or not. Sophie also has a daughter who actually has misophonia too. So lots of complex perspectives here. and some things we've never discussed before, like what it's like to date a man in his 90s who eats with dentures. Please follow the show on Instagram at Missiphonia Podcast, also on Facebook and Twitter. And if you like this episode or any episode, you can help a lot by leaving a quick rating or review wherever you listen to this podcast. All right, now here's my conversation with Mary and Sophie. Yes, it's a great honor. Mary and Sophie, welcome to the podcast. Great to have you both here.
And [1:32]: Thank you. We're very excited. Thanks, Miguel.
Adeel [1:36]: Yeah, so actually, yeah, we might as well talk about where we're located. You're actually very close to me here in St. Paul. That's correct?
And [1:45]: Yes, I'm actually in the suburb of St. Paul, Arden Hills at my father-in-law's house. But we're definitely neighbors.
Adeel [1:55]: Right. Yeah, exactly. Yeah, I've had a few people and seems to be a bit of a small community here. Great. And do you want to maybe talk about your relationship with Sophie?
And [2:08]: Oh, gosh, that was a long time ago.
Adeel [2:12]: Well, maybe just briefly to speak kind of the... Yes, yes.
And [2:15]: We don't like each other. This will be a good show then. Right, right. We'll argue the whole time. Actually, I feel so lucky that I married into this family. Although as far as misophonia goes, I didn't realize that Sophie had misophonia until 2019 when my son was diagnosed with misophonia. And I, you know, looking back, there are some things maybe we can talk about here today that I think, oh, misophonia explains X and Y. And maybe it does or doesn't. but i told i actually happened to tell judy's only or sophie's only daughter judy is my husband's twin sister so i'm here with my mother-in-law and she has four children and of those four there are twins and i married john one of the twins the other twin is judy and i was telling her about merits misophonia diagnosis my son and judy i told her and judy started to cry Tears just started rolling down her cheeks and she said, I have that too. And yes, and I was shocked, shocked. And then she told me the story of being awake in the middle of the night, very upset about things that had happened during that day related to her misophonia. And she was Googling, why am I so angry? and then she found there was a word and she it was probably early in the morning or late at night like the wee hours and she texted sophie and said am i remembering am i telling this story right there's a name mom for this thing because sophie has it too and can you do you remember that text oh yes tell us about it i uh well i saw the word and i right away went on my computer and looked it up
Adeel [4:22]: and got the meaning or whatever of it and yeah it felt good to know what we had the sulfonia yeah wow and so um sophie do you want to maybe um i don't like to ask women their age but you want to tell um roughly kind of how old you're just just give people context like how you know how far back this goes
And [4:50]: It goes back quite a ways. Because I was thinking last night, okay, when did I notice how weird I was? But it goes back, I think, in my 30s. So that would be 50 some years ago. I'm 87 and a half. So it went, it goes back quite a ways. Do you remember anything as a child or teenager? um no i think it was more so when i started having my kids okay and these little things like the boys cracking their knuckles at the table would just drive me crazy so i would go over and pull their hair until they stopped. And all my boys had crew cuts, so it was kind of hard to keep hold of their hair. But it was very, very irritating.
Adeel [6:02]: Gotcha. How old were your kids at that point? I was just going to say, right now they are
And [6:13]: I would say they were 10, 11, and 13.
Adeel [6:20]: Gotcha. And your daughter was probably not making noises, but she was probably watching.
And [6:28]: Right. She never cracked her knuckles.
Adeel [6:31]: And I guess growing up when you were a child, I know you said you don't remember anything. I guess... Well, what was I going to say? Well, I was going to ask you, was there like a day, like a moment when your kids, when your sons were making those sounds that you remember? Or did those kind of evolve?
And [6:56]: Yeah, like a first moment. Not really, because people who crack their gum or... You know, you go into a store and you see a salesperson behind the counter chewing like a cow. That stuff goes way back because it just did. It was just irritating to be around that.
Adeel [7:28]: And that went back even further than the boys? Or did that start to annoy you after your boys started to, you know, making those sounds?
And [7:37]: Anybody snapping their gum, I can remember way back. I mean, we probably never chewed gum until I was a teenager because we were poor. But, yeah, I'm sure that goes back to before.
Adeel [7:56]: childbirth yeah okay that makes sense and um what did your family say as you were um you know pulling hair and stuff like were you did you say like you know be quiet he's bothered sounds are bothering me
And [8:16]: No, I think actions spoke louder than words at the time.
Adeel [8:21]: And when did your daughter started to show symptoms? I'm wondering if it was like soon after this.
And [8:29]: Oh boy, pretty young. Because if she saw, if we were sitting at the table and happened to have raw carrots and we started eating you know taking bites oh my goodness her head would shake and she would look at each one of them and say stop it stop it really bothered her and this was before the knuckle cracking phase i would say around probably around the same time
Adeel [9:03]: Gotcha.
And [9:04]: You know, this is interesting. When I met my husband, he was telling me stories about his childhood and one of the very first stories he told me I mean, the very first thing you tell someone you start dating, those are important. Those are formative and they stand out. And he told me that he and his two brothers used to torture, that's his word, his twin sister by chewing. And I don't want to say what they chewed to trigger people, but they would take food that they knew would bother her until she went in her room and started screaming and crying. And my husband felt kind of bad about this. But I think from his stories that misophonia was kind of a big part of their family life, even though there wasn't a word for it. So he laughed when I said that. I think that's true. Yeah. Especially Judy and myself. Yeah, we were triggered a lot.
Adeel [10:10]: Did you guys, did you two maybe bond a bit more over this, even though you didn't know what it was the name, but I'm wondering if that brought you two even closer.
And [10:19]: Well, it brought us closer because if we were in the same room, I'll give you an example. When I was married to Donald, we were all eating an ice cream cone and he got down to the cone part, you know, which is crispy and when you take a bite. Well, he got down to that part. We're all in the same room. And as soon as he did, both Judy's head and mine moved towards each other because we heard the bite. So I said something to him. I said, oh. you have to chew that loud or whatever I said. He took the rest of the cone and just threw it against the wall. He throws the ice cream cone across the room and he kind of swore at us and said, can't even eat an ice cream cone in this house. Well, by that time, Judy and I are laughing and you know, what can you say? I went and cleaned up the mess. So that was one big example.
Adeel [11:41]: Yeah, interesting. And there must have been more. I'm sure Donald's probably pretty frustrated as most of our partners and family members are.
And [11:56]: one thing i noticed sophie and this is one of those things that i wonder about and i've never asked you is so judy who has misophonia has always hosted the family events you would always go for many things celebrations etc and she always serves lasagna or sloppy joes i never can remember a crisp crunchy food at these family events except potato chips because of the chip dip. That's a family legend. But if you think about all the annoying things that might arise with misophonia and crunch, I think Judy just omitted 95% of those things. And I'm talking, I've been with this family 30 years. That's 30 years of soft meals. Sophie, what do you think? Am I wrong about that? I could be wrong. Yeah, I don't know. Do you know what I mean? Yep, I know what you mean by her forgetting to put those out or whatever.
Adeel [12:57]: Forgetting, quote unquote.
And [13:01]: Yeah. So I really don't know.
Adeel [13:06]: Yeah, and what about, so this was like the 60s or 70s, I guess, 50 years ago?
And [13:11]: Probably, well, my kids were all born late. 50s and 61 and 62.
Adeel [13:21]: And so you guys, you two had each other, you and Judy. Did you ever meet maybe anybody else that you remember thinking, oh, thinking back like, oh, they probably have the same sensitivities and they're just going around like us without any idea.
And [13:38]: You know what? I have never run across anybody who ever complained about that. Like I have. I'll tell you, I'll give you another example. I play bridge and one time I had, there were eight of us here and several of the gals, when they would deal out their cards, they would snap them as they put them down. I finally just took my hand and put my hand over whoever was doing it. And I said, you're snapping the cards. Well, it got to be funny because ever since then and to this day, they do not snap their cards.
Adeel [14:29]: See, it could be that easy. You can just say something and other people will accommodate. It's usually not a big deal.
And [14:39]: Right. And one more. And this one is really, I was really brave.
Adeel [14:43]: As many as you want, please.
And [14:45]: when I did this, when I was at the theater with my husband and he was kind of deaf. So he could not hear this, but I could hear this gal cracking her gum in the next aisle down a few aisles. I mean, it was loud. And I finally, I looked at my husband, I thought, oh, he doesn't hear it. So I finally said, I gotta go for a minute. And I got up And I went over and I found her because she was still cracking it. I just came up behind her, poked her a little on the shoulder. She turned around and all I said was, when you crack your gum, it's very annoying. She just looked at me and said, okay, she never cracked again.
Adeel [15:41]: Again, wow, you are a hero. Everyone in the... I was a hero. Yeah, that's interesting. And this was since you found out it had a name, or this was, like, back in the Wild West?
And [15:58]: I didn't quite understand what you said.
Adeel [16:01]: Oh, was this since you knew it had a name? Or was this back before you knew this had a name, and it was just kind of annoying you?
And [16:08]: Oh, it was before.
Adeel [16:10]: Okay. Yeah, I was just wondering if, you know, having the name. Yeah, yeah. Oh, just, yeah. The reason I asked was just wondering if, like, knowing that it had a name maybe has made you kind of feel more confident to kind of, sometimes it makes people feel more confident to kind of be able to advocate for themselves. But it sounds like you've been doing it for decades.
And [16:31]: Yeah. No, it did not give me any more confidence. I just did it because it was so annoying. I couldn't watch the movie because I couldn't hear it.
Adeel [16:46]: So I'm assuming then, you know, back in the 60s, 70s, when you have something like this, you know, you're not, well, I don't know, like therapists were not, or psychiatrists were not as big of a deal back then. Did that ever kind of occur to you to maybe seek out some help or maybe for yourself or your daughter? Or was it really like, it's my problem, it's just my quirk?
And [17:10]: Yeah, absolutely not. Did I try to find out what it was? Did you feel? It was different than other people? Well, yes, only because if my kids were around and, you know, triggered something, and I would say something or do something, they'd say, Mom, you're weird. That's about it.
Adeel [17:36]: Yeah, that's the classic label. Yeah. Pre-2000s, even now. Did it, maybe between yourselves and the rest of your family, you and Judy and the rest of your family, I know you two seemed to kind of, well, at least move your heads together when you were being triggered, maybe be a bit closer. Did you find that it caused any kind of distances or rifts between, you know, the misophonia side of the family and the rest of the family?
And [18:04]: Not at all. No.
Adeel [18:08]: It was just classic sibling kind of stuff.
And [18:11]: Right. And everybody has a sense of humor.
Adeel [18:14]: That's important. Yeah, yeah, yeah.
And [18:16]: Yes. So I think that's how we got by. Just last of all. Well, I have to say one thing that struck me, which was about misophonia. I want to say maybe two or three months ago, I'm writing a book about misophonia. So I wanted to, quote, interview my sister-in-law and mother-in-law about their experiences. And that, quote, interview, I haven't told you this, Sophie, quickly deteriorated into stuff in a good way. into Sophie and Judy laughing about all their triggers and making fun of people. Like it kind of going from person to person situation, bringing out the trigger and just chortling over it. Like, can you believe how awful X is? And they're just a sloth and they are laughing. And you know, this went on for an hour. and it was like it was so funny and i thought and so for me as someone who don't i don't have misophonia i was just so struck by how alive and present misophonia still is in their lives at 87 and 58. i mean do you remember the conversation and like laughing about things that triggered you um i i was struck i couldn't get a word in i couldn't talk they were having such a a gleeful uh raking other people and sounds over it was great though i mean i'm not saying that in a bad way Do you remember some of those things, Sophie, that you guys bonded over or talked about? John's boots, Judy's partner, his footsteps were one. Oh, that didn't bother me. It bothered her? Right. Oh, dear. No, there were so many triggers. Really, there were. But I didn't. think anything of it. I try to stay away from, like if I'm in a department store or something and I hear something or see something, I just move on. Yeah, that's the thing, back then you couldn't just pop in some noise-canceling earbuds and your iPhone in the 60s and 70s, so... Excuse me, it bothers me to no end if I'm in a store and somebody is on their cell phone and I can hear them talking.
Adeel [20:48]: Oh, absolutely, absolutely, yeah.
And [20:50]: That's got to drive everybody nuts.
Adeel [20:52]: Oh, absolutely.
And [20:54]: Are you triggered by the sound, by the talking? I suppose. Mm-hmm. Mm-hmm. Doesn't that bother you? If somebody's talking on the phone and you're there? It annoys me, but I don't get angry. I don't feel like I have... It doesn't do anything physiological to me. I might think disdainful thoughts about that, but I don't have...
Adeel [21:19]: So Sophie, back in, you said in the department, in department stores back in the day, like your only coping mechanism at that point is probably either to say something or to leave. You can't like, you can put headphones on yourself or anything and try to block it out.
And [21:34]: Right. I think I walk away a lot.
Adeel [21:38]: Yeah, that's good exercise. So that's not a bad thing. What were some other, did you ever... I know nobody is aware of it, but were you trying maybe any kind of relaxation or just trying to close your eyes and breathe or something? These are kind of fairly recent methods, but I'm wondering if you had tried other things as well.
And [22:03]: No.
Adeel [22:05]: Just kind of, yeah, just say something or leave. Yeah, that's kind of all the tools that were probably around back then. And you said, so Judy, well, actually, let's talk about maybe your husband. Did your husband, you know, would just throw ice cream against the wall? And did he ever kind of like...
And [22:27]: take start to sympathize a little bit or or try to take it more seriously after after that you know the the second or third decade of seeing it yeah nobody did oh no really no did you bring it up to donald and say no he who knows if he even noticed that it bothered me because i would never tell him to Could you please be a little quieter?
Adeel [22:57]: Right. Did you hold any... I mean, obviously, I know we bottle things up and we laugh about it, but did you ever feel like you were holding resentment or anything about it? Lingering resentment?
And [23:11]: No. Not really.
Adeel [23:15]: Yeah, I mean, that's that's that's actually not a bad thing to kind of like be able to be able to realize that, you know, it's not the other person's problem. It's it is kind of our inability to to kind of be able to deal with it. What about Judy? Judy's Judy's partner. How did how does he how did he kind of react?
And [23:34]: Oh, he thinks she is really weird. Yeah. For lack of any other words.
Adeel [23:42]: Right.
And [23:43]: He just he just. He does not get it at all. I do hear stories about that. You know, it's interesting. So I know that Sophie is very much of a generation and a person constitutionally who isn't going to say anything about anything that's making her uncomfortable. And so I can see how and why she might never have mentioned Hermes de Boni under triggers all these years. And I think that generationally things have changed and her daughter Judy is more able to assert her needs and say thanks to her husband, et cetera. And then you go down one more generation and your grandson Marek, my son, we organize our family life around his misophonia so that he's comfortable so so i just see this interesting generational change you know right and and sophie i will say too that you and judy have been the most supportive people for our family talking to me about americans misophonia where i don't often get support and it's meant a lot okay That's sad. Yes. Well, they, I don't know, they just don't, either they don't dwell on it or they just don't understand what's going on with us when we have a trigger, when we get triggered.
Adeel [25:20]: Yeah, that's how the young people say it. Way to go, Sophie. And yeah, so let's talk a bit about Merrick. I'm curious about the timeline here. So Sophie and Judy, did you remember, when did you guys realize that it had a name? Was it like five years ago or a couple of years ago kind of thing? Or was it after Merrick started to show signs?
And [25:45]: Well, I know that it was before, because I told you in 2019, two years ago, that we had just discovered this. Okay. Or maybe it was, yeah, or maybe it was, yes, that's, or maybe it was later, a little bit later, but she had known for a year or several months. So it was either 2018 or 2019 that you guys... found out. Does that sound about right, three or four years ago? Well, it was when you found out about Merrick, and you told Judy, and she said, hey, I got a name for our problem. Oh, so it wasn't, that's how you found out. No, I just, it's like yesterday that I found the name, or heard the name. Yeah, it hasn't been three years. Oh, okay. No. So I had a different story. So you found out through me, through Merrick, getting a diagnosis.
Adeel [26:44]: Yeah. And how does that make you feel? So if you're like, you know, you had this daughter who's got it now, now your grandson is kind of plagued with it. Kind of, I guess it kind of helped you sympathize.
And [27:01]: with it did you um it sounds like mary's saying like you guys have been very supportive uh that's probably means a lot to him and mary i guess i mean i i feel really bad about what has happened or what they're going through that i've yeah i have never heard of anybody going through what they're going through
Adeel [27:27]: Right. Yeah. Especially at this age. Well, actually, I mean, Judy was going through it at a young age as well. But at least now that, you know, people have more awareness and there's like, you know, weirdos like me doing podcasts about it. So hopefully, hopefully word is getting out more. And Mary, do you want to talk a little bit about Merrick's history with it? Like how long has he shown symptoms? And I know we've talked in the past how it's really been, and you just said it's been kind of revolving family plans around it. Do you want to talk a little bit about Merrick's experience?
And [28:05]: Sure. And I think it's interesting. to, I mean, it's very interesting to me how I had a different story about how you found out about Escaponia selfie. So I'm glad that we are doing this so that we, you know, maybe. can learn more. But I think the thing when Sophie says that she's never heard anything like this is that Merrick is triggered deeply by his parents. And he has visual and audio triggers. And he's got pretty severe misophonia, I would say, and I think he would say that too. And so it's really, really, really... horrible for him to see or hear his parents and we respect that and accommodate that and we text and we email we organize our home life so that he doesn't have to see us i feel like we're pretty close despite or maybe even because of this via text and email you know sadly but i i can't even tell people that this is our family life because i feel the judgment that i get as a parent a lot of judgment a for the misophonia its existence at all you're judged and b for the choices that we're making as a family to fully accommodate our son and i think that sophie might not agree with the choices of accommodation i don't know we've never talked about that but she's never ever questioned what we're doing and how awful it is for Merrick, not once. And that alone is huge for me as a parent. And Merrick, I haven't really had a, quote, normal conversation with him in two and a half years. Sophie, I don't know, what do you think about our situation and Merrick, when you learned about it? Actually, I was shocked that you are going through this. I've just never heard of that. I mean, and what else can you do, though? Right. You don't have too many choices. And I see that's where you differ when you say, what else can you do? Because you are thinking like you understand what America is going through. Yeah. And you can't put a kid through that. It's a sad, sad situation. I've never heard of parents being the trigger. Have you?
Adeel [30:53]: Oh, yeah, absolutely. In fact, yeah, that's what's so fascinating is that, I mean, honestly, the most common initial triggers are parents, like, eating around the table, from what I've heard in, like, about 100 episodes. And so, yeah, that's why it's interesting. I mean, you haven't, like, your generation hasn't heard about it. Obviously, you're exposed to it because you... you develop triggers and you said Judy had triggers, but I'm sure that a lot of people that you knew that you were friends with growing up and later on as a parent probably had it and were just kind of like in denial or kind of suffering in silence. Are you with us? Yeah. Can you not hear me?
And [31:42]: Just a second of a drop.
Adeel [31:45]: Oh, gotcha. Yeah. It said my interconnect connection is unstable. Weird. Okay. So let me repeat that. Yeah, you were asking if I've heard of parents being the triggers. And I was saying, yeah, I mean, the most common initial trigger actually is parents around the dinner table or basically their eating sounds. And so that's interesting that, you know, you, Sophie, had never heard of this because I'm sure... a lot of people that you grew up with and you were friends with as a parent were probably dealing with this, but in a different way and without actually realizing that they were dealing with it, probably suffering in silence.
And [32:32]: You know, Jennifer Brout, who is a heads-up music on the international and you know, an activist and someone who also has misophonia, made the observation that, and she's probably my age, you know, 60-ish, that in her generation, kind of a reflective selfhood wasn't a component of childhood, adolescence, or early adulthood. That reflective selfhood that I think is pretty common for everyone nowadays to think about how you feel, how you say, your emotions, etc. I never had those thoughts. at all when i was growing up i mean i cannot even tell you i never in a million years thought about my own safety agency my own needs didn't occur to me until i was into my 20s and i think that this reflective self that we have um i don't know i don't think it really existed i think jennifer joe brow is onto something in how misophonia has been recognized by older people and I'm going to say, Sophie, that I think that's true for you. I don't know. Maybe you can correct me or admonish me. I have talked to a lot of people about this. Not one in all ages. These women I play bridge with, three of them are in their 90s. They have never heard of misophonia. And I'm not sure they even, I don't know. They've just never heard about it, so. Do you think they believe you? Oh, yes. Okay. Because they see me in action. This one gal, before she bids for something, she's doing this. Yes, yes. And I just go like that. Right, right. I just put my hand on hers. I guess she's, oh, yeah, you and your thing. But they don't get mad or anything, but they just... They probably have never been around anybody who has all these little problems. Do you listen, I know you don't listen to the radio and like have background noise. Is that because of misophonia? I have no idea. I can stay on the radio on for just so long and then it's noise to me. Then I turn it off. I think because I know that that kind of tinny quality sounds sometimes can trigger a merit, you know, background music thing. So just wondered if that was... No, it's not like chewing gum or chewing carrots or eating corn on the cob.
Adeel [35:31]: Yeah, right. Half of our food. Yeah. The women you play bridge with, I mean, I'm sure they haven't heard of misophonia, but I'm assuming that they have never kind of observed these conditions in other people to their knowledge.
And [35:51]: So they have your friends they bridge with haven't really dealt with other people about the same problem. Evidently not.
Adeel [36:01]: What about other people you've talked to? You said you've talked to people of all ages.
And [36:06]: Nobody. They don't even if they have triggers or if they go through what I they never say.
Adeel [36:14]: Right.
And [36:15]: Oh that's what happens to me too. Oh yeah I can't. No I never get a Therefore, I feel like I'm, Judy and I are the only ones in marriage. Right. So tell people about, I was also struck, you recently started seeing someone new, Ralph. Yeah. And one of the things that when we were talking before, he had talked about coming over to your house for lunch. you thought maybe that wasn't going to work so why didn't you tell us like how did misophonia play into getting to know ralph and starting to have lunch with him she's making a face like you're eating bad medicine so he know i've told him about it oh so is this the first person that you've told about like this okay no but he Well, he's older than I am, so he forgets it quicker. So I will call him 85 times. Oh, that's funny. Yeah, because he said, now, what are you doing today? And I told him I was on this podcast, you know, and he said, oh, that's right. Oh, that's right. But then I'm kind of this, I'm right behind him, you know. I don't remember everything either. But did you wonder, I know that there was, you had some hesitation about eating with him. How did that go? Did you go to a restaurant at first? Judy brought that to my attention. She says, how does he eat? I said, well, I try not to watch because I don't want it to bother me. Right. You know? Right. And can you keep it from bothering you if you don't watch? Right. You can't. Well, he's, he, He's not bad. Let's just say I've been with some that are much, much worse. So he's okay. I can handle it.
Adeel [38:17]: Well, okay. So you've, that's just fascinating. So you've, you've also, you've dated some other men in the not too, in the not too distant past. And it's been an issue.
And [38:30]: We are both laughing. So Sophie is 87. Yeah. And I'm just going to just, you can say whatever you want. She's a beautiful woman. She was a beautiful young woman throughout her life. And men follow her and fall in love. at her feet her home and it continues she has buried one two husbands and still has a bevy of boyfriends from which to choose and i'm not kidding and so ralph is the most recent and lucky i've known ralph he is god father to my twins who are now 59 and i went to school with ralph So he's only a year, he's 17 months older than I am. So we know all the same people and blah, blah, blah. Yeah. And he was, when you told him about the misofonia though, so you, you didn't, when was the first time you had, you ate with him? Was it in a restaurant? Oh yeah. Okay. Oh yeah. Yeah. Nothing. Nothing. No, triggers none. Okay. And did they... did he start triggering you later? Or... No, he really doesn't trigger me. Okay, that's good. That's good. That's good. Because, you know, I mean, not to make any stereotypes... Wait, wait, he does... he could trigger me because he's inter-repeating himself. Okay, say more about that. What can you say? except that i hear the same story and he does he's not he doesn't have dementia or anything just maybe he doesn't remember that he told me but it's the same same story same thing all every and i don't have guts enough to say well i take that back yesterday i was with him and i did catch myself saying yeah you told me yeah you told me but I don't think he gets that. That's funny.
Adeel [40:37]: Definitely repetition has come up as an issue. It's usually short-term sounds, but I can see how it could kind of expand to an entire story, an anecdote that you hear over and over again.
And [40:53]: Yeah, and I even hate to tell Judy that, yeah, but he repeats himself. He said, no, I just can't do that. It's kind of a mark against him, you know? And I don't, I don't want that.
Adeel [41:09]: Do you have a visual trigger, Sophie? Like when you see somebody eating, is it give you at this point, like almost the same kind of as hearing it?
And [41:19]: When I see mostly women, because a lot of men don't even chew gum. When I see a woman chewing
Adeel [41:29]: and her mouth is going lickety split yeah it can trigger me yeah very common yeah um interesting okay and and what about um and you know not that i was gonna say earlier not not to put uh stereotypes but uh you know older people sometimes have uh uh more like eating sounds they might have like stuff in dentures or something. I'm wondering if you've noticed that more the eating sounds, you're more sensitive maybe to folks who are a little bit older because of maybe they eat a little bit differently sometimes.
And [42:10]: Funny you should mention that because Ralph does have dentures. And he does chew differently. But I'm really trying not to let that bother me. Mm-hmm. Mm-hmm.
Adeel [42:26]: Got you. Okay.
And [42:27]: You're looking away. You're concentrating on something else. I'm eating. You're eating. Okay. I'm looking at my food or whatever. Yeah. And I think that's not atypical. People might focus on eating and not look. Yeah. Yeah. I feel like I have a tendency to, if I'm not looking right at them, I'm looking... And I'll be on him. Which I don't like doing that either. I like eye contact. But you do that so you're not triggered. Maybe. Maybe.
Adeel [43:05]: And some of your other, some of the other past suitors and boyfriends. any kind of interesting uh react have you ever broken off a relationship because you know you just they just chewed gum like a cow for example i'm sure she would i did dump two of them a couple years ago because of that wait i'm gonna i'm gonna at the same time
And [43:35]: No, there were no triggers. Okay. There just wasn't anything there. Well, that's good. That's good. So you can see there is a long list of boyfriends, which I think is awesome. So, Sophie, I wonder, I'm just going to ask you, have I triggered you? Like when we're eating and... You never eat. How did that happen? No. No, so I haven't. No. Okay. So I thought about that. Like what if I'm triggering you now, but nothing like that. I don't see you that often, you know. Don't we have family things here? No. Do you ever... Oh, that's good.
Adeel [44:26]: And what about, do we talk about Judy's husband? So I know it sounds like she does a lot of events. So you probably see them together in family events and whatnot, at least. How does he, do you know the story of how he's kind of like dealt with this over time?
And [44:45]: He doesn't. Okay. He just says, God, you're so weird. You know, he just doesn't understand it.
Adeel [44:58]: Does anyone talk to him about it? Like the misophonia side to try to kind of like get him to understand? I have tried. Yeah.
And [45:07]: I've tried, but he doesn't get it. Have you talked to John directly? Oh, yeah. And what do you say to him? I say, John, Judy has to ask.
Adeel [45:16]: Better leave my daughter alone.
And [45:17]: I said, things bug us. We can't help it. Yeah, I have told him that several times, but she'll come along and tell him that two of his mouth shut or something, you know. And it just goes on. Judy told me that she feels the tension with John comes because He's not upset about misophonia. He kind of has an understanding. But he feels, this is what Judy told me, that Judy's handling it wrong. Her reactions are the problem, not misophonia. But her response makes him angry. Because it's him doing something that irritates her. And he is so laid back as far as other people doing that, that, yeah, it causes friction between them. I mean, just at that moment. And of course, he'll say, she is so weird, you know, blah, blah, blah. So you can only try so long.
Adeel [46:44]: Are there any other instances of, like, other kinds of, you know, mental health matters in the family? I'm just curious if there's any other kind of reference points that people are able to kind of, like, compare misophonia to. No, it doesn't sound like it.
And [47:01]: Well, actually, for our huge family that we have, we are very fortunate. I agree. There's not, I mean, there aren't, you know, you think about the things that sometimes accompany misophonia and OCD and anxiety.
Adeel [47:19]: Yeah.
And [47:21]: Yeah. Now, my son has OCD, so we do have that. But in the larger extended family, nothing.
Adeel [47:31]: Even his cousins, like even the younger generation, because, you know, a lot of things tend to get identified in the younger generation maybe more often.
And [47:40]: we should say that we know of right right that's applied of course yeah and i'm gonna say that your family the thompson sorenson family that i married into open communication about one's interior life is not a family hallmark so your family's not known for like saying what's inside and sharing deepest feelings it seems like there's a very much ethics of pull yourself up by your boots and carry on right right yeah except like judy she will she will tell you how she's feeling and how she didn't sleep and where she's hurting. Judy has a few other issues. Let's just say that. Health issues. And she's sick of going to doctors and I feel very bad about all that. And these are like joint pain kind of things, unrelated. Physical ones, yeah. Yes, very definitely. But one of my profound misophonia moments as a person outside kind of looking in but living with it was when I talked to Judy and told her about Merrick. And she started crying, and I asked her what her first reaction to learning there was a name for this thing, what did that feel like? And she said that she was relieved to know that she wasn't a bitch, that that's how she saw herself her whole life, as an irritable, crabby, mean person, the B word. And when she heard there was a word and a reason why, she feels like she's always angry. That changed how she saw herself. And that was very powerful for her. And that was powerful for me and sad for me to think that someone I cared about had been thinking of themselves in these really kind of problematic terms her whole life. You know? I don't know if you felt a sense of relief or something. When you heard the word, you said it didn't matter that much. But I don't know if Judy's talked to you about that, but I think it mattered to her. I don't know. No, it didn't. I was glad there was a name. You know, it did make me feel one way or the other.
Adeel [50:06]: Yeah, I mean, the fact that it has a name, it's not going to automatically lead to a cure or anything. But yeah, it's interesting. Some people, it's just a name. Others, maybe it kind of puts a label on a big part of their identity, which is probably what happened with Julie. Because a lot of people, not just Judy, walk around with... lot of guilt and shame because when they because they yeah they think of themselves as a bitch whether the male or female and and they see what the distance it causes between them and others and I can see how she could get very emotional
And [50:47]: I don't know what I would have done without a name. Again, from a different perspective, loving someone with misophonia, having a name and understanding why my child was avoiding me, standing around a corner and not looking at me, walking away. I mean, I knew he was running away from me and avoiding me. And it was so terribly painful and confusing. for the mom as an outsider, finding out why that there was a name and there was no pathology between us. That was everything. That was everything for me. Well, I'm sure. Yeah.
Adeel [51:30]: And so I guess how long did it take for you guys to realize that it was a real thing with Merrick and not just him having a problem with you?
And [51:43]: You know, I think it Probably from the time I really started knowing that he was avoiding me and it was the distinctive thing that was just me because I was initially the only person triggering him in the house. Probably just six months.
Adeel [52:01]: uh which isn't a huge you know long amount of time but ideally it was so pronounced and dramatic so sudden right so it was like almost like one month one month he was always in your arms and then he's doesn't want to be anywhere near you yes do you remember what what start to cause it was there a day was there um some sound
And [52:25]: You know, he has told me two different things about his first memories. So then he concluded he doesn't remember exactly. You know, one of the possible first things would be middle school orientation. He remembers my foot jiggling. And it was a visual thing. And that was a very early trigger. And that was three years before I noticed anything. So he reports that as a very early trigger. And around that same time period, he would hear me, mostly me at night going to near his bedroom to use the bathroom or get a towel or something. So he would hear footsteps and noises that he was triggered by and associated with his mother. And then I would say about, he just kind of dealt with, I noticed it. in retrospect because we slowly became less close we didn't quite do the things together that we used to do i remember once about two years into his misophonia again i don't know he doesn't know it has a name and i was asking him about a video that he made with his friends and he just literally turned around and walked away And I said, what's wrong with you? And he said, I don't know why, but I have to leave. I can't talk to you. I can't explain it. Don't make me explain it. And I didn't. And he left. And then it was a couple more years, slow estrangement. I knew something was wrong. I couldn't pinpoint it. But then when he started really avoiding me and it was clear he was not going to be in my physical presence, no matter what, that we sought out help.
Adeel [54:15]: found a psychologist who thankfully pretty quickly recognized misophonia huh that's lucky that because a lot of people it's kind of a crapshoot if you go to a psychologist even now to if they've even heard of it so that's that's great that you found did you seek out somebody who does it by chance or did you uh call around and ask if people knew about it
And [54:41]: well here's the lucky part so you know merrick had ocd and he the same psychologist who was treating him for that quickly diagnosed the misophonia however with this ocd person i kind of went to the internet and picked somebody close by but i talked to a friend who was a professor in psychology and she said no no no you need to do your research and find like a specialist, someone specially trained in pediatric OCD, spend time, find the top three people within 90 minutes of your house and start from there. And that's what I did. And this particular clinician that we found, was amazing. And not only did he quickly diagnose misophonia, but Merrick has been symptom free from OCD for two years. So yeah, yeah. I mean, of course that could change and you know, but the quality of the professional in our case made all the difference.
Adeel [55:45]: So symptom free from OCD was that through like talk therapy or medication?
And [55:53]: He went, initially taught therapy, and then he went through Rogers Behavioral Health, all ERP exposure therapy.
Adeel [56:02]: Ah, interesting. Okay, gotcha, gotcha. And then his misophonia, though, is unchanged?
And [56:08]: His misophonia is unchanged. And when he was being treated for OCD with exposure therapy successfully, Even though his parents didn't want him to use exposure therapy for OCD, he wanted to try it for misophonia. And he was 16, so he tried using exposure therapy for his misophonia. And unfortunately, in our situation, that escalated his misophonia. It got dramatically worse after. Oh. okay that was our experience with that you're like you're giving me a look sophie what do you think about exposing someone to the trigger sounds and have them get used to it i always that into my mind how come they why can't we do that you know but uh do you think you could you mean it entered your mind why couldn't you do exposure therapy and get you used to it I don't know. Would it be too hard, do you think, to sit in here? I have to think about that. I really have to think about that.
Adeel [57:29]: Yeah, it's been tried. It's definitely, it's not a, I wouldn't say it's the most popular option. Just basically from the, you know, if people have severe misophonia, their instant reaction hearing about exposure therapy is like, oh my God, that sounds like hell. If it were to help, that would be great. But there doesn't seem to be, I mean, there doesn't seem to be anything conclusive about anything related to misophonia yet. But yeah, that seems like a, at this point, kind of a tough kind of therapy to, try to do. And in your case, Mary, it seems like, yeah, it had the opposite effect. So it's another knock against it.
And [58:09]: Yeah. And, um, and I think, you know, this is that even I think the key point, you know, my takeaway is that I'm very enmeshed in misophonia. My son has it, my sister-in-law, my mother-in-law is that we don't know. Will there be a form of exposure therapy that's more nuanced that can help? Will there be medication? I don't know. And that helps me understanding that we don't know anything yet, that we're still very early. And that takes some of the pressure off finding exact solutions and allows me to live in ambiguity a little bit.
Adeel [58:55]: Right. Yeah, that's kind of where we're all living right now in a little bit of ambiguity. Well, yeah, I guess, yeah, thanks to both of you, Mary and Sophie, for coming on. Thanks, Mary, for thinking of Sophie and Sophie accepting the invitation. It's, yeah, super insightful to kind of hear how far it goes back and how things have evolved.
And [59:22]: Thank you. Thank you. We'll be excited to hear it. Thanks for doing this, Adele. We really appreciate it. Thanks. Okay. Thank you. Bye-bye. Bye.
Adeel [59:31]: Thank you, Mary and Sophie. Fascinating conversation. I can't wait for Mary's book to come out and I'll have to have her back home. If you liked this episode, don't forget to leave a quick rating or review. where I listen to this podcast, you can hit me up by email at hellomissifunnypodcast.com or go to the website, missifunnypodcast.com. Remember, to support the show, you can also, if you can monetarily leave, you can find our Patreon page at patreon.com slash missifunnypodcast. Music, as always, is by Moby. And until next week, wishing you peace and quiet.