Denburg family - Navigating Life and Designing Spaces with Misophonia
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 12. My name is Adeel Ahmad, and I have Misophonia. It's the end of the year, 2021, and I hope everyone is having a wonderful holiday, or end of the year, season. Last year around this time, I had two episodes back to back of a mother and a daughter who both have misophonia, Jane and Cleo. I decided why not have a family theme every year, and this year I'm happy to bring this incredible episode featuring the Denbrug family. It started as just an interview with Alexandra, but then her parents were interested in talking about their experience with having a child with misophonia. I get so many parents writing to me with questions about misophonia that I figured it would be great, a great idea to have both perspectives in the same episode. And so here it is. It's a long one, but I assure you it's worth it. You'll hear first my interview with Alexandra, followed by my interview with her parents. Alexandra grew up in North Jersey, had a pretty typical Misophonia onset story, was actually bullied from an early age, up even through college, and now has a successful, award-winning interior design firm. And links to that in the show notes. When she found out that Misophonia had a name, it was a revelation to her, as it was to her parents, who just became even more supportive, to the point now of wanting to help others who are dealing with Misophonia. Let me know what you think of this episode. Email hello at misophoneypodcast.com or hit me up on Instagram, Facebook, or Twitter. Links in the show notes or it's misophoneypodcast. If you'd like to support the show with a modest contribution, I do have a Patreon page at patreon.com slash misophoneypodcast, which is really going to help support the show, especially trying to get transcripts out. for all the episodes. My ongoing thanks to all the Patreon supporters so far. And don't forget, you can leave a rating or review in Apple Podcasts, which really helps the algorithm get this podcast in front of more people. And now for the first time, you can leave a rating on Spotify too. So if you happen to use Spotify, I'd really appreciate that. All right, now here's my incredible conversation with Alexandra and her parents. Alex, welcome to the podcast. It's great to have you here.
Denburg [2:28]: is fabulous to be here thanks for having me cool yeah so I guess well let's start with the kind of the usual stuff like kind of where where are you I am currently in North Jersey I have been I'm originally North Jersey but I was living in New York between Manhattan and Westchester for about a decade And then life took me to Mexico City. So I was there last year through the major portion of the pandemic and have returned since, I think, December of last year. So I'm back.
Adeel [3:05]: did you go to Mexico, uh, pre pandemic or kind of a few times?
Denburg [3:10]: Yeah. So I was in a relationship with someone born and raised in Mexico city. And, uh, he and I were kind of doing a few months at my place, a few months at his place. And the initial longterm was, yeah, we'll, we'll move, you know, official to Mexico. Um, I own a design interior design firm. And so I'm thankful that I get to make my own schedules and all those good things. And, uh, It made a lot of sense to be able to I mean, Mexico City is like a four hour, four and a half hour flight. So. Cost of living down there is comparatively to New York. It's like free. So I had calculated that I was able to fly back to the States for at least a week, once a month. plus cost of living in Mexico was less than what I was paying in rent at the time. And I was like, this feels manageable.
Adeel [4:09]: Right. Yeah. Four hour flight is really not that bad at all.
Denburg [4:12]: And I've got like a team that's local and I figured if I needed to send somebody out, I could, and I'll swing up for all the big stuff. So, um, but the relationship ended. So I'm currently stateside again.
Adeel [4:25]: okay okay yeah and uh okay so um well yeah we'll get into well yeah i like to at some point uh ask uh if it's not too much prying like uh did relationships end because of mississippi obviously that's my obvious question definitely i'm a full open book and whenever that question happens if it's now i'm happy to chat about it but yeah i'm i'm happy to talk about any of the questions you've got Okay, well, maybe let's just go all the way back maybe to end and we'll work our way back up. But how did you, yeah, like when did this all start for you? As far as you can remember.
Denburg [5:03]: Oh my God, my whole life. So I think it's, you know, similar trajectory as I have not, I have been listening to your podcast for the last three weeks. But I have yet to make my way fully through all the episodes. So from what I have, to do thus far I'm on the same kind of path as everyone really has been where very little memory of it when you were truly a young kid um and then around nine ten eleven ish is kind of where the first memories of real triggers and anger kind of started and so I think I really fall into that camp um I have a couple early memories and i i came very prepared i have notes so i have a couple early memories yeah um that i even spoke to my parents well my mom was specifically recently trying to see if she had any more specific timeline memory than i would um but i think ultimately we kind of really came to the 9 to 11 ish range um So my poor dad, as it seems that like most other people, my dad was 100% my first trigger. And I love him to death, but I can't be with him when he eats most of the time. So that was a very, very real one for me. I have a memory of, we have very dear family friends who are in Massachusetts and we were visiting them on a vacation. And the son who is my age, was eating an apple, which, key food. And I was seething. When I, like, the rage inside a small child's body was very real. And I just, you know, I didn't explode, although I have plenty of times with my family. But I just very much have that specific memory bound into my, you know, somewhere in the brain. And I also have a memory when I was a young kid of not being able to fall asleep at night because I was able to hear the bleeding sounds coming through when my parents were just still awake downstairs. So whether they were loading and unloading the dishwasher, whether they were just talking as quietly as they were trying to talk If the TV was on, I could hear it all and it would drive me absolutely crazy. And I started just going downstairs and I would fall asleep on the sofa because I had found it was better to immerse myself in loud sound than it was to attempt to hear that kind of bass low frequency coming through the floors.
Adeel [8:04]: Yeah, maybe your brain at that point kind of at least knows, it tells your brain kind of what the sound is versus trying to, you know, if it's a low sound, sometimes you're frantically trying to listen for all of it or trying to find some signal in the noise. But if you're right immersed into it. Not that I condone exposure therapy, but this is something different.
Denburg [8:29]: I also do not condone exposure therapy. That feels like torture. This very much didn't feel like I was subjecting myself to something like that. It just felt more along the lines of like, well, me being in my room is not working. So I would just kind of move myself to where the volume was as if I was a part of it and it it at least it maybe didn't make falling asleep easier but it definitely knocked down the trigger feeling that you kind of start to build inside of you of like oh my god i am trapped in the sound yeah so it alleviated that portion of it
Adeel [9:12]: Right. You feel less threatened by whatever this perceived danger is.
Denburg [9:16]: Yeah, this sound is not attacking me as much down here.
Adeel [9:19]: Because I guess maybe you feel like you can, exactly, you can feel like you can control it or somehow you have control over it by kind of choosing to be near it, maybe.
Denburg [9:27]: Correct, yes. I at least had the agency to get up and move closer to it. Yeah.
Adeel [9:31]: Right, right, right. Wait, was this after the apple biting incident?
Denburg [9:36]: I wish I knew. I have a feeling it was all relatively within... Like, if you stuck these memories in a blender, they're all probably somewhere on the same, like, grandiose timeline. It's got a single dot. But these were the memories that I had had, and I kind of brought them to my parents. And I was like, do you guys have any sort of timeline for these three things? Was I mad at this person as a family friend, who I'll keep nameless, not that they're ever gonna listen to this, but was I angry at this person about the apple before I used to lose my mind on dad? Or did the dad thing predate? The one thing my mom had a memory of that I have zero recollection, she said, again, around that 11-ish age, We were walking up the stairs of the house and she said, I turned around to her and in the most honest and vulnerable way, just looked at her and quietly said, I don't feel like myself and just gave this little smile and just kept going upstairs. And she believes this is around the time of the misophonia really kicking in and I was noticing it within myself but was completely incapable of recognizing what was happening and I thought that was an interesting memory that I just don't have but she has told me this multiple times and throughout our conversations of me attempting to like prep for speaking with you she brought it up again and was like this would be a very very interesting pin on like the timeline if this was somehow correlated to a golf.
Adeel [11:29]: Did she, did she do anything? And obviously it was a strong memory for her. If she remembers to this day, did she, did it kind of freak her out? I mean, some people could hear that and be kind of freaked out.
Denburg [11:41]: I said, this sounds like something coming out of like a horror film.
Adeel [11:44]: I was going to say that. I didn't want to say that, but I was thinking.
Denburg [11:46]: I'm receiving her telling you this story, being like, mom, this sounds absolutely terrifying. Yeah. She said, no, nothing about the way I presented it, nothing about my face, nothing about the smile.
Adeel [11:57]: Nothing about your neck turning 180 degrees.
Denburg [12:00]: Yeah, 100% super, super, super creepy. And I am not a horror fan. And I was like, no, this really doesn't sound super cool. And she was like, no, no, no. Nothing about it sounded or felt scary. It just seemed like you were aware of something that was happening.
Adeel [12:15]: Yeah, you were self-aware of something, right.
Denburg [12:16]: Yeah, yeah, yeah. And so I think...
Adeel [12:19]: those are my fun bullet points for my early memories of it yeah that's great yeah mostly just kind of a vague recollection of things starting to get bad but this is interesting it's good that you've kind of found a few memories did did anything did your parents want to maybe try to take you to some kind of a therapist for some for you know some of this okay yeah yes yeah so i spent my i guess pre-adolescent into teenage years in
Denburg [12:47]: probably absolutely every single auditory peer doctor, brain mapping, neurology, IQ tests, hearing tests. I mean, they, it was like they threw absolutely every piece of spaghetti at the wall to see what would stick. And, you know, what we were able to... learn at that time was I have a hyperactive frontal cortex. And so I just take in a ton of information at once. I have a high IQ. And I have above average hearing. Now, all of those things are interesting, anecdotally, none of them explained a neurodivergent person on a thing that was not yet discovered and so it was kind of all like interesting information gathering but nothing cracked the code so i really just had a sense of like not i i don't ever remember feeling like there is something wrong with me in a sense that i should be ashamed or in some sense of like oh my god i'm so other than But I absolutely had a sense of like, there is a rage inside of me that I have no ability to control and I cannot handle it. And so I would do the norm. I'd seclude myself. I really wouldn't have dinner with the family, which they were okay with. Nobody understood why. I think it was probably more like teenage angst in their minds.
Adeel [14:29]: Right, but they didn't shame you or do anything?
Denburg [14:31]: No, no.
Adeel [14:32]: Yeah, yeah.
Denburg [14:33]: Yeah, the only thing, and again, it was never shame. The only thing that I also have a very vivid memory of, and I had a lot of feelings towards as a kid was, I mean, I have one of these like memories on loop in my brain that I can almost watch it as if it was a movie. Like I see myself kind of where my dad was eating something. something and i was sitting in the kitchen with my mom was in there and i you know it's it's that like zero to 60 hulk rage that just like you have to like shout yeah yeah it's like you have to just like there's no control no thought process it's this like visceral reaction and i would i don't even remember what i would shout i'm sure it was horribly mean things to my father um And I remember both my parents who are, again, my parents, I absolutely adore them. And they are, I came from a very like granola crunchy, love and express your feelings family. And so their response to my rage was like, Alex, if you could just please try and restate that a little more calmly, we might be able to listen to you. And when you are sitting nobody said like you can't get up and leave but when you are sitting trying to shout a feeling and the response is met with such calm requests for you to be calm i remember feeling even more enraged and i remember telling them i have no control over this and instead of them noting it What they would then go is like, well, maybe what you have to work on is controlling your emotions. And like, maybe that's the thing that we have to be working on. And so, you know, and I recently talked with them about this exact memory a couple of days ago. It's like the guilt that they have now for not in their, I think in their minds, handling it better, which I constantly try to alleviate them. Cause I was like, you weren't handling anything incorrectly, but there was nothing known to handle.
Adeel [16:48]: Yeah, I mean, that was better than what a lot of ways I've seen, you know, her parents handling it.
Denburg [16:52]: Yeah, absolutely. My dad was like, we thought you were just like a jerk. Like, that was kind of like verbatim. That's understandable. We just kind of thought you were a jerk. And I was like, honestly, like, I kind of also was. But like, there was a reason for it.
Adeel [17:07]: Right, right. Interesting. Were you... yeah so yeah you don't know how to were you did you looking back were you kind of looking were you asking for something were you uh when you were yelling out was it completely visceral or was it um your way of asking to be quiet or to change the way change their behavior um great question i i think it was probably not something that i had
Denburg [17:38]: the wherewithal to consider what i was asking i think it really was a reaction i was right i was in the moment there was a trigger and i screamed i think that was kind of like genuine cause and effect i think there was nothing past it
Adeel [17:57]: Yeah, it doesn't sound like it, but was there any, I think, I don't know, tensions with your parents, especially with your dad? Maybe some, I don't know, low-level trauma or anything that was happening? Changes other than the usual, just kind of teenagers?
Denburg [18:12]: Yeah, awesome question. So, and actually one of my things that I have written here to ask you about later on. Yeah, yeah, yeah. So, yes, I mean, I... So this is not misophonia related, but it very much is childhood trauma related. Um, and not my family related. They kind of got the home life version of all of the, and part of my friends that I was experiencing out of the house. So I was very badly bullied growing up and my, my whole, whole, whole life. I'm talking like ages six to I transferred college. Um, And various reasons, of course, and it would change as we were getting older, as with the type of bullying, quote unquote. But, you know, I came from a very upper middle class, small, not rural, just tiny town in North Jersey next to a bunch of really awesome big towns. And Verona is, I think, still primarily white. primarily conservative town and my family is like super duper liberal granola crunchy people and so it was just kind of the dichotomy of like who i was as a human being and like the foods that i would bring to school in elementary school and like we didn't celebrate christmas like everybody else we celebrated the winter solstice and so it was just i was like the weird kid and it just made me an easy target and so that tended to carry through so i did have a lot of sadness as a child in general that had genuinely nothing to do with my family who is wonderful and loving and kind but when you bring that home and you don't really know how to communicate that and then when you are at home there's all these triggers that are setting you off again i just tended to really find isolation as the best route for stuff
Adeel [20:22]: Yeah, interesting. I mean, I know. Yeah, I mean, I'll get into a little bit about me. I grew up in kind of a religious household and I was, you know, I kind of felt like I was wasn't really my. kind of me like primary for the milieu that i uh or the environment that i necessarily uh felt most comfortable in so i would maybe i would like get songs stuck in my head i listened to a lot of music and i think focus on that and then i think when something would break that concentration or that need for isolation or to get away is i think when triggers would be most painful.
Denburg [21:02]: Oh, sure.
Adeel [21:03]: It's just interesting. I mean, I'm going to let the researchers listen to this and researchers listen to this to try to figure it out. But yeah, I wouldn't be surprised if there was some link there between your kind of low-level stress that you're always putting home.
Denburg [21:18]: Yes. And just through listening to your podcast has really been my first time exploring a world of people with misophonia. It's just been me my whole life. And the correlation of hearing an abundance of people discuss some form of childhood trauma, be it sexual, be it bullying, be it familial, be it whatever it might have been, seemed intriguing to me. And I'm very clearly aware there are, I'm sure, hundreds of thousands of people who have experienced chamas as children that have not gotten misophonia somehow. But I do find that correlation to be an interesting piece of something. It feels important. I don't know if it is.
Adeel [22:13]: yeah i'm i'm totally on the same page it feels important i don't know i don't know yet yet if it is but you're right i think there's uh lots of people who have not developed this funny but then i think this yeah sadly a lot of people who have but just are still don't know what it is or have
Denburg [22:29]: misdiagnosed it either themselves or other people have misdiagnosed it for them i'm curious that you went through a battery of testing were you um did you get another label like adhd or some something else like ocd no no i just got called she's extremely bright i mean like it was almost infuriating to be like i like winning i was winning all of the tests You know, like, my hearing, off the charts, good for you.
Adeel [22:59]: Right, right, right.
Denburg [23:00]: IQ text, off the charts, good for you. Your, you know, brain mapping and all of these, like, electrodes and we're, like, doing things on the computer and we're watching what lights up. Oh, you're super, super attentive and super aware and can process things really quickly. Great job. Like, it just was like, are you kidding me? This is happening because I'm, like, somehow working better? This doesn't make sense.
Adeel [23:22]: Yeah, it's not something I want to compliment for. Yeah. Yeah.
Denburg [23:26]: Can we not continue to please say, awesome job. You've really nailed that one.
Adeel [23:32]: I'm miserable. Right. Okay. Interesting. Did the trigger start to, your poor dad that you said, obviously, big trigger. Did it start to kind of proliferate into other types of triggers and people?
Denburg [23:45]: Oh, yeah. Oh, yes. So I definitely think it was my dad's chewing. There was, oh, my goodness. I don't remember who it was. was i want to say his name was andrew who did one of your podcasts early on but i'm when i tell you i rewound it and listened to it like three different times i was almost in tears laughing the way he said i don't know what it is about my dad's mouth and how it's formed that he chews extra loud like these are verbatim the things that i have said out loud to my family i'm like i don't get why dad is so extra in this way yeah um Yes. So my dad, I definitely think in the family was the first chewing trigger. Now, luckily, everybody triggers me. So good job, family. the joys of misophonia that just continues as you age um but you know my sister so yeah each each family member kind of had their own hot spots for me yeah so for my dad it was definitely chewing right yeah i have a younger sister she's uh three years younger she walks okay so my sister when i say like string being thin this girl walks like an elephant and the heel hitting the floor oh yeah yeah i know what you're talking about mad so much so that my parents wall-to-wall carpeted both our bedrooms because they were just going to do hers and then figured we can't do one kid without the other that's not fair so they wall-to-wall carpeted our bedrooms just to attempt to mute her room next to my room um She also, you know, we're a very kind of musical and artsy family. I'm a singer. She would just kind of like hum and snap her fingers and both the humming, the like light just coming as she's going about doing whatever she's doing or the like random snapping of the fingers. Those three things for my sister were absolutely the triggers for her growing up. And then my mom has the tiniest tiniest overbite and when i say like small i mean like as age has happened her teeth have shifted just enough that the s's and t's as she speaks make that perfect thing where like i don't have to hear i can't hear anything else she's saying but those sounds are coming through is it super high frequency like that they're really sharp yeah I don't know if it's a higher frequency or if it and it's something that I am actively aware of my own teeth as I get older. I'm like, please don't shift. I don't want my asses to be like that because I'll go out and get a retainer. That's fine. Yeah. My mom's like, should I get one? Does it bother you that much? But. I remember being in like we do like family trips and we would drive. A lot of times it was like the summers we'd go to Cape Cod, which was like a six hour car ride. And so we were in the sweet minivan that we had and I would always claim the back row. I was like third row is mine. And I would try to have headphones on. I was listening to anything I could and somehow still my parents in the front seats trying to whisper, I could hear the essence of my mom. And I just remember shouting for six hours, like, you have to shut up. I'm going crazy. And again, I don't blame them for thinking that I was like the biggest asshole child you could possibly have created. I was a monster, but I was a miserable monster who only was trying. but I was an absolute torture to the family, I'm sure. And I feel horrible about it to this day.
Adeel [27:38]: Did it, I mean, it seems like you're still close. I'm curious how you felt it affected the relationships there. Did it have any lasting kind of impact, distance between you and your parents or other family members?
Denburg [27:55]: So, yes, you are correct. My family and I are very, very, very close. I mean, in general, we're just a very, very close knit family. We probably had a lot of distance when I was growing up. Again, I think it was like combo turmoil of like what I was dealing with outside the house and what I was dealing with inside the house. So I am quite sure that that made life relatively impossible for the both of us. So much so that like when I was dating my boyfriend in high school, like junior and senior year, I was kind of like living at his place just to kind of get space and be away from the family. But once Misophonia was a thing, like it had a name. It was that... quintessential New York Times article in 2009 that came out.
Adeel [28:47]: Yeah, I had Joyce Cohen on the podcast. I don't know if you heard that.
Denburg [28:51]: Oh, I haven't listened to that one yet. Okay, I'm making my way. It'll be the next one that I do. I've tried really going in chronological order as best I can. But I was in college and my parents mailed me the New York Times article. So they found it first. and they mailed it to me and they had called me the day that they put it in the mail and said like sweetie we're sending you something we're not telling you what it is a surprise is on its way that's amazing and like and they know me like i cannot emotionally handle surprises i'm a full child with that and so i was like what like immediately you know this i'm going to go insane i was like did you overnight it at least
Adeel [29:37]: They're getting you back for all those years.
Denburg [29:39]: Exactly. They're like, no, no, no. We really, we actually hired a bike passenger and it's going to take a few states over. I remember the evening. Like I remember it so clearly and I will very much try to not cry as I say it, but I, I opened it. I was sitting on my bed. I opened this like yellow, you know, the big yellow envelope.
Adeel [30:05]: Yeah.
Denburg [30:05]: and i unfolded the new york times article and i just read it and i was in tears because it was all of a sudden like oh my god oh my god this is it and it just clicked like absolutely everything just kind of it was like a puzzle piece just all happened at once Or like in The Wizard of Oz, where it was like black and white and then it turned into color. And you were just like, yup, life makes sense again. I'm not absolutely nutty. This is a thing. And it was just feeling that that changed everything. And since that day, they took me to... an actual neurologist who had known about misophonia and i was officially diagnosed with misophonia um they finally were able to really have a more realized conversation with me that when i said like hey guys remember 10 years ago when i would told you like i couldn't control this and they're like yup and i was like now do you kind of get it and they're like yeah we're really sorry like it was just we finally got to have a conversation where it made a little bit more sense that like the thing we're talking about is in the room with us both that seems like it would have been yeah oh yeah and then it immediately went to and again i'm so grateful for my family because I sat and I hope that there are other podcasts that I've not yet listened to that had support systems like my family that I've just not gotten to hear about yet. Or if I'm the first person, I'm putting this out into the ether. People, please do this to your long misophones. there became like plan of attack, course of action. How can we make this better? If we are together because we are a family and inevitably we are human beings bound to each other for life, what can we all do now? And it was immediately this scramble, my parents and my sister, of just like, okay, if we're together and we're trying to eat, alex you sit at the head of the table in the dining room and we'll all kind of head down to the other end music we'll put the bose speaker in the center of the table and like music can be on is that okay for you um if we're having something that requires like the clinking of the dishes unless that utensil against the plates sound um they bought from ikea actually they're non-disposable plastic utensils And so my parents will eat with plastic utensils around me because it just dampens that specific trigger. Um, and this is a, it's wonderful. And I mean, we're talking that article came out in what, like 2009 or so. So, okay. That puts us at 12 years and still there is stuff and experiments that we are trying so much. So since I started listening to your podcast, I found out about brown noise because I had been aware of white noise and pink noise, brown noise.
Adeel [33:36]: And somebody has it in the background here.
Denburg [33:39]: I adore it. It's wonderful. And, um, I've, I've tested it out and I told my parents like, Hey guys, somebody on the podcast mentioned that they put in headphones and they eat with brown noise on. And it helps dampen the trigger sounds. And my parents were like, okay, when can you come over for dinner? We're going to experiment. And we'll just try out different foods. We'll sit in different places around the house. you just have in your headphones and let's see what we can do. We'll put it on the speakers. You wear your headphones. You can take out the head. Like it was just experiment time.
Adeel [34:13]: And I was very, just from, uh, just from the tip you heard on this podcast, I mean, this happened three days ago. Wow.
Denburg [34:22]: Or four days ago. Yeah. My family is wonderfully accommodating to a point where I feel this like hang of like love sadness because, I don't have to change for them, right? Like they are just making these bend over backwards, sweeping life changes for me so I can be a part of the family. And they, I know because we've spoken about it, but for them, they feel it's their responsibility to do these things because they have a child who needs it done. End of story. We will do whatever we have to do so you can feel as happy as possible when you're with us because we refuse to have a life without our kids. And I'm very, very, very blessed to just have a family like that. So when I found your podcast, I immediately sent it to them. And I said, you have to listen to at least 20 episodes. No less. And within the first one or two episodes, they sent the podcast to my sister and said, absolutely, this is a must listen. You don't have a choice. They've now sent it, I think, to a handful of other people. The night that we practiced the like brown noise dinner, we also my parents and I watched Quiet, Please for the first time. And I think I won't even say this to the. because I have really learned the format of your podcast but I won't even save it to the end I just want to so genuinely thank you for doing this because more than creating a community of misophones to just not feel alone and hear other misophones and just relish in the fact that they are experiencing things other people experience the learning tool that it gives the families of the misophones is crucial Because my parents have just grown up for 30, okay, so figure if I'm 34 and it started when I was 11, we're talking a couple decades of only hearing a singular voice try to describe something. But the minute there are all of these other voices describing similar or the same things in slightly different ways, they are understanding it so much more. And they will come to me and go, we just heard so-and-so say this thing and they described it like this. Did you experience that? We had no idea. And so I just, I'm just so grateful that you created this, that it is out there for people to access and that it is beyond a tool of just misophone community. It really is a teacher. I think it's amazing.
Adeel [37:10]: Yeah, that's really great to hear because, yeah, I usually just kind of hear from, you know, listeners or people who've come on the show. But I never really hear from, like, or rarely hear from, like, what effect it has on, you know, family and, you know, loved ones and, you know, how it helps them. So that's really, yeah, that's really touching to hear. So I'm glad it's doing that for your family.
Denburg [37:32]: Yeah, yeah, in a big way.
Adeel [37:35]: Yeah, because if they've heard episodes, they've heard some quite opposite stories of families kind of almost disowning people.
Denburg [37:45]: I know.
Adeel [37:46]: It's heartbreaking.
Denburg [37:47]: It's absolutely heartbreaking.
Adeel [37:50]: This podcast was basically inspired by Lyle. It was, I think... one of the first five or six episodes i read about the miss funny convention and um that's why i realized that we we you know we need to move beyond just uh you know the rants you read about on reddit and facebook uh we just like there's a lot there's a deeper there's deeper stories a lot of similarities like you go to these you meet these strangers like you honestly i feel like i know half of your feelings growing up. And it's just like you kind of connect with somebody on like a deeper level. So yeah, I wanted to get these stories out there. And it's just, and these secondary effects of like helping the families is huge because that kind of is a win-win for everybody. So yeah.
Denburg [38:36]: It really is. I mean, it's just insight. Like insight can never be a bad thing. And I think the more of these that get made, the greater the pool of knowledge could possibly be.
Adeel [38:47]: Yeah.
Denburg [38:47]: So.
Adeel [38:48]: There's a lot coming, and actually, sneak peek, Jeffrey Gould, who did Quiet Please, is going to be coming on soon, too. So, yeah, that'll be... And how did you... Speaking of Quiet Please, I could not... It took me a few times to sit through it, because I would just break down. Were you able to sit through? I did. I did.
Denburg [39:10]: I really muscled through it. There were some times that I felt myself kind of choking up or holding back. Not that I would have an issue with crying, but... Right, right. It just, I mean, it is so, I keep using the word visceral because it kind of only feels so ingrained into like my nervous system in that way. But there is a deep transparency amongst, I think, misophones where you can say something or someone can say something and every other misophone goes yep got it yeah yeah in a way that that doesn't happen in a day-to-day life because most human beings are not dealing with this stuff and so just listening to these families and these people is oh powerful and sad and important, I think. Yeah. So, yeah.
Adeel [40:14]: Yeah, no, thanks for that. That's really good. That's really good to hear. I wanted to maybe rewind a little bit back to like, you know, you mentioned you were, I know you're being bullied growing up, like being younger. How did that evolve? And do you feel like that was, there was any relation to the misophonia? Like were you in kind of your high school and later were you...
Denburg [40:36]: um like when you said you got transferred you transferred colleges whatever was there any relation to misophonia or was it the class no it was yeah it was very uh people based but not misophonia based and so um i i have memories of having sound triggers either you know i had a roommate two times throughout my college experience i like did it freshman year because i didn't know any better and then attempted it one other time where it was like a much larger space and we each had our own rooms. So at least we had room to get away from each other. But both were very huge mistakes and I've not done it since. But, you know, it would be like the standard stuff in classes, people whispering, eating, opening a bag of something that like
Adeel [41:32]: Oh, God. Yeah.
Denburg [41:34]: It is just like a violent pain.
Adeel [41:38]: It is. It's always like, I feel like I'm ready for it in a theater or watching, you know, a play, but it's just like, it's always louder than I remember it.
Denburg [41:46]: Every time. And it's like, how is my plastic not that loud? How did your plastic get to be magnified seven times over?
Adeel [41:55]: To make it extra crinkly.
Denburg [41:56]: Yes. Just like, what are you doing? I don't get it. But, It was a lot of that in schools. And I remember when I was, so I started my college career at Pratt in Brooklyn. And during the freshman year.
Adeel [42:14]: Excellent school, yeah.
Denburg [42:15]: Thank you, thank you. During freshman year, I believe with the exception of architecture students who have their own freshman year curriculum, every single major's freshman year is the exact same. And they put you into what they consider to be core classes. So it's like color and design, 3D, 4D, video classes, drawing and figure drawing classes, you know, all of that stuff. So you kind of just get a very well-rounded art education as a basis for your continuation of moving forward. My 4D class was a lot of, it was like a woodworking, wood, you know, build shop, plaster molds and stuff like that. And the sound of the workshop the physical like having to like use power tools was so horrible i couldn't be in the room and i would always try to and of course this was pre knowledge of what was going on and so i would just try to explain to my professor look i've made all of the marks on this stuff can you please cut this for me i cannot go into this room and If I caught him in a good mood, he or someone in the class might help me. But oftentimes it was like, no, no, you're a big girl. You can figure this out on your own. Suck it up. And so I just remember running into these rooms and just sloppily doing whatever I had to do so I could just get out as quickly as possible. So I definitely had moments like that. And then when I transferred to Penn State, which is a much larger school, That was my first time in large lecture halls. And that was torturous.
Adeel [44:04]: Yeah, yeah, yeah.
Denburg [44:06]: And I had one math class in particular that had probably 300 kids in it. But it was oddly not, I mean, sure, the kids obviously really would trigger me depending on what was happening. But it was this like fan projector above the room. That would make the worst sound. And I couldn't figure out where to sit in the classroom, but I wasn't hearing it. And I kept trying to tell the professor, I cannot be in here with this thing. And he looked at me like I had six heads. I swear. And he was just like, what could you possibly... It'd be like me walking in and being like, I'm really sorry. I'm seeing people today, so I have to head out. It was just... This look of bewilderment that I could attempt to make up such a crazy excuse to not come to class. And I was like, all right, well, I guess I'm out. I was like, can you give me homework before I come to class so I can leave? I tried it all. He kind of was like, listen, you can come to class or you cannot. That's on you. You know, as good teachers do.
Adeel [45:17]: Yeah, yeah, yeah. Um, and, but, so how did it affect you? Like, uh, obviously you get, I mean, you're doing your, like your, uh, therapist that earlier, you're, you're super bright. You made it this far. Did you get out okay out of Pratt? And, uh, it seems like you did somehow muddled through.
Denburg [45:36]: Somehow unscathed.
Adeel [45:37]: Yeah. Yeah. Yeah. We often do that somehow.
Denburg [45:40]: Yeah.
Adeel [45:40]: Yeah.
Denburg [45:41]: I think I don't know if this is for across the board to everyone, but you have to, I believe, find some humor in the fact that like a sound is driving me into a corner. Like it's a horrible, horrible, horrible thing to experience. But at the same time, I have to be aware of like what is going on, too. And yeah, so again, I left. So shockingly enough, I left Pratt because by the time I started It was another bullying situation, but on the fun reverse end. So I went to Pratt and they looked at me without, again, getting to know me as a person and assumed I was the popular girl from high school who was the cheerleader who made fun of all of them. And so they took that time as full retaliation because I'm like, you know, the blond haired, blue eyed girl that walked around like smiling all the time in Abercrombie and Fitch in like 2006. I was like, hey, guys, what's going on? Absolutely not. And it was just, I think, a complete accumulation of all of my years prior thinking I finally got out of my town. And then all of a sudden I start a new place and I'm like, how did I not escape this? And so I transferred to Penn State because it was, it didn't even have my major. I transferred into a major under their arts and architecture department called integrative arts, where you have to submit a thesis to the school saying, I'm making up my own program. This is my curriculum. I'm using X credits from this program, X credits from this one. And they admitted me into it. But I absolutely fell in love with the fact that I could personally just walk around campus over and over and over again and never see the same person.
Adeel [47:36]: Right, right.
Denburg [47:38]: So that was just heaven on a very personal level, but absolutely had nothing to do with misophonia whatsoever. Misophonia played zero part in my outside life through most of college. And I say most because by the time I got that article, And I was like, oh, this is a thing. I became very vocal about it. I would tell friends, I was like, here's the thing. We're at a baseball game. There's this guy behind me. My friend would like see me rising in the bleachers. And she was the first person in my life who noticed me in pain. And she took it upon herself to turn around and say, like, you're going to need to stop that.
Adeel [48:25]: Okay, so you had, yeah, you had other people doing, yeah.
Denburg [48:29]: I never asked, and she only has done it the one time, but it is something that I will never forget. Yeah, and it just, it felt oddly validating to see somebody else take action, because I'm not the person that's going to yell at strangers. I'll yell at you if I know you, but I'm not going to yell at you. I'll remove myself if I don't know you. Right.
Adeel [48:53]: So then, yeah, then after, yeah, so after college, there's a bunch of, a number of people have said that there's kind of like a quote unquote kind of chill period where it's like maybe you're out in the world, you have a little bit more agency, a little bit more control of your environment. Did it start to maybe, did you start to notice it less or was it kind of pretty constant and kind of accelerated?
Denburg [49:17]: Oh, it for sure has accelerated.
Adeel [49:18]: Yeah.
Denburg [49:19]: It definitely comes back.
Adeel [49:21]: Yeah, yeah. And then it comes back. I'm curious.
Denburg [49:26]: It's just a really fun cyclical thing we're dealing with. No, I mean, so post-college, I moved back in with my parents. I don't remember having any major memories, as the movie would say. that happened during those few months, but very shortly after I moved into my then boyfriend who became my husband's apartment. So I wasn't really back home with my parents for very long. And I think in general, as like the broad sweeping adulthood post college, I Yes, just have a lot more agency to make decisions when it's not my specific family related when it comes to do I want to go to a specific place? Am I going to the movies? Absolutely not. I've tried and probably once every few years, I will give it a shot with the awareness that like, I will tell the people that are with me or the singular person most realistically, because I can't deal with that many people doing things for me. But like, I'll tell the person, listen, if we go to a movie, I need you to be okay with the fact that A, we're going to have to go during a very off time where most people are probably working so we can hope for as empty a theater as possible. B, we have to sit as far back as we can. My favorite, favorite, there was a theater, sure, it's still there. There's a theater on the Upper West Side on Broadway in the city. And It has a row of what I believe are actually handicapped seats because it's just two individual seats with a space next to them for where a wheelchair can wheel up. And there's no seat behind them. And I was like, that's it. That's my ticket. I can sit. as far back as possible in the middle of a Wednesday. Yeah.
Adeel [51:32]: Yeah. Those matinee kind of.
Denburg [51:35]: Yes. And still have my earplugs just in case I need them.
Adeel [51:39]: Right.
Denburg [51:40]: And that's just a once every few years attempt that inevitably ends me getting annoyed and going, I'll never do this again. But sure enough, a couple of years later, I'll try it.
Adeel [51:50]: So, yes, coping tips. Very similar to a lot of people, I guess. You know, obviously earbuds and maybe plugs. I usually don't find plugs super helpful.
Denburg [52:01]: I'm going to help you with this. I have a type and I have a very specific way of putting them in my ear. So I will happily tell you all of the tips and tricks because I've been sleeping with earplugs since I was about 13 or 14 years old every single night. It is my one horrible planet littering that I do. Oh, gotcha. Yeah. Because I've tried. I've done the whole custom earplug route.
Adeel [52:29]: Does that work?
Denburg [52:32]: No, they are horrible. Now, this was many years ago. I'm sure there are new materials and things, but I never felt another need to explore it. I think typically the custom earplugs are harder because they're really a mold of the ear. And the thing that actually works is the foam extension within the ear is what blocks it and so it is just a trick of how to properly put it in your ear and what earplug to use but i've got all of it written down for you
Adeel [53:06]: Yeah, I mean, speaking of businesses, I want to hear about your business, especially I think it's related to interior design. And there's been kind of talk, I had Olivia on in the past, who's doing research about misophonia in the workplace and ways to kind of help there. I'm curious. Well, first tell us what your business is about. And then obviously, I'm going to be curious about like, has misophonia, sound design kind of entered your practice?
Denburg [53:33]: I would love to say that it has, but it hasn't. Um, so I own an interior design firm. Uh, we work in New York and New Jersey as well as, you know, e-design should anybody throughout the country be interested. Um, but yeah, I specialize in high end residential design, but of course can do all types of everything. Um, and for me, interior design, I, really love the applied psychology behind it. The understanding that human beings on a subconscious level are really taking in the world around them and interpreting that. And it relates to how you feel and operate and function on a higher or lower level within the space. And so my job, I believe, as I've gifted this title to myself, but I believe my job in this world is to create spaces that are not just beautiful. I think interior design has gotten a very bad rap for being just like the beautification of one space for beautification sake. And I think the reality is living within an environment that is designed well, because there is a true way to design something with a higher level of success and another way. So it is creating a successfully designed space can improve a lifestyle of the people within it. And so I utilize applied psychology kind of at the core of all of my design concepts, but then it is really person-based. So I take a good amount of time to speak with and learn and understand my client, the aesthetic direction that they prefer. I don't like to say style because I think the reality is people just don't have a singular style. People are unique and layered and complicated and interesting. And so it's like, how do we figure out how to bring this forward in the best way visually while still making the space productive in the best way that it can be for the way that that person is choosing, that family is choosing to use the space? And that's what I do.
Adeel [56:00]: Yeah, no, that's interesting. And I mean, it's not like it's psychology and your environment. These are all things that we are very concerned about in misophones, even though, you know, it's obviously visual audio is a little different, but it's the same kind of concerns, you know, same kind of like...
Denburg [56:19]: yes and i think of awareness of your environment and i i think recently somebody had mentioned to me like do you think that was kind of the genesis of your interest in spaces Which I truly had never made a connection to. But I think could be entirely plausible. I've always redid my bedroom as a kid growing up. We have a four-bedroom household. And between the three bedrooms that were being occupied every year or two, we were all like, cool, new bedroom. We're changing rooms. We're painting. We're getting new stuff for it. I went through multiple iterations of my own bedroom in whatever space I was in. But I... I do think that there is something really interesting if I look at it with a much broader brushstroke. I'm very particular about my living spaces as an adult. And yeah, it would make a lot of sense that for me, my environment needed to make me feel a certain way.
Adeel [57:20]: It's controlling the environment. I mean, what better way to control environment than to repaint it and decide exactly how it's going to look and operate.
Denburg [57:27]: Yeah. Yeah. I figured out a way to scale it up.
Adeel [57:32]: Right. In profit. That's beautiful.
Denburg [57:34]: I love that.
Adeel [57:34]: Scale that business. right um excellent okay and uh and then in your workplace like um it sounds like you're moving around a little bit but um do you have any weird rules about not weird uh rules about uh or how how is have you kind of like um well i guess you know how is it working is it did you well more maybe more importantly did you uh want to start your own business so that you can kind of like um
Denburg [58:02]: you know have that flexibility and not necessarily like be sitting in a you know in a cubicle or something i'm curious if that's part of your personality which great question it's very much a part of my personality yeah i do not enjoy being told what to do especially if what i'm being asked to do doesn't make logical sense to me i'll just kind of have like i don't get why i'm doing it um And I've also been very lucky that I've really never worked in a space that's office-y. I've had a really artistic life. And so I worked at a law firm in the financial district for about six months when I was like 23, because it was one of the partners with a father of a family that I used to nanny for when I was younger. And they needed somebody very quickly. And I was like, yeah, I'll do it. Sure, why not? Even at that time, it was a very small office with like six, I think it was like three partners and a couple other people. Everybody had their own office. All the doors were always closed. And I was in the front of the office alone. So that was really great. But short of that, I've never worked in an office setting in my life. I've just done this. And so I have listened to all of the people on your podcast. about how they have made career moves or very decisive decisions to work from home or to leave a company and do something that can isolate themselves. I think if for whatever reason my firm ever shut its doors, which knock on wood that doesn't happen, but should for whatever reason that be, I now am aware that I would have an incredibly difficult time figuring out what to do because I would never be able to go into a setting where other people are. And so I'm really grateful that this is something that I've been able to afford myself. Yeah.
Adeel [60:00]: Yeah, that sounds great. And luckily, anyways, the world is getting a little bit more flexible, conducive to that.
Denburg [60:07]: Unlucky reasons, but yeah, lucky. Right, right.
Adeel [60:11]: I should say that. Yeah. And I guess maybe let's talk about, well, we talked a little bit about your friends recently. Some of them sometimes kind of advocating for you. Maybe like relationships. I don't know if you want to talk about like... that like you were married before. Did misogyny ever kind of roll into that at all? I know it can get complicated, but yeah.
Denburg [60:38]: It did, but my ex-husband is a therapist. Um, not, I would like to think that unfortunately that really didn't, clearly it didn't work out, but, um, but I am good at choosing the company I keep in the sense of, I, I feel no shame in like pretty immediately. As soon as I'm recognizing, Hey, I'm potentially seeing a reason that a trigger might happen. I'm the first one to say like, Hey guys, quick thing. Uh, just so we're all aware. This has happened for me. This is what I got. It's this thing. And I just kind of throw it out there in the ether. I don't need it to be a big conversation. It doesn't have to be like, let's sit down and talk about it. It's just like, I am mentioning this thing about me. And that way, if, and when something happens and I have a reaction or I look at them and say, Hey, listen, I got to get out of here. And I just get up and leave. And they might come to me afterwards and go like, what the hell just happened? I can say like, remember I told you that I have this thing. Oh, that's what happened. And it's like, it's a very matter of fact. It's like, we don't have to make it a bigger deal than it is. This is just how my body functions. Um, So with my ex-husband, he was very aware of it. I think what's great is every time he was with my family, he watched the dynamic of how everybody was kind of, for lack of better terms, caring to me. And so I think it definitely enforced the fact that this is a thing. And so... For the most part, he's a quiet eater. Thank God. It's something that I vet from the very beginning. But if and when there was ever something he was eating, like he would just come to me and be like, hey, Al, can I have an apple? Is that okay? And I would say like, sure, not a problem. And if I could... it because I was in a good mood and I got a lot of sleep that night and like my energy reserve tank was full. I would attempt to withstand it usually for like one or two bites. And then I would just go into the bedroom and I would go into the bedroom. And if I needed to put on music or something, I would, but typically it was just like retreat into a different room, close the door, wouldn't hear the sound anymore. And he would text me and say, okay, I'm done. And I'd be like, okay, five minutes in and out. Done. Awesome. Um, so that's how he handled it. And he was always incredibly okay with me saying, if we are going to do a movie, I, it needs to be in the middle of the day. Like he would suggest, yeah, it'd be fine. Like I would be like, listen, I know you have like a whole work day, but you've got like a three hour break in the middle. So I'll meet you uptown and we'll pop in to see this movie and then go back to work and I'll go home. And it would just kind of get scheduled that way, but he was really okay with it. And so I'm sure it's a pain in the ass. Like, of course you're doing things that are not necessarily normal or usual and the way that you would go about doing it if you hadn't needed to think about it. But yeah, he was good. And then the person that I was dating when I was living in Mexico also was incredibly amenable. a very, very quiet human being in general. So like his chewing really never bothered me. And I just, again, it's, it is something like a very early on. I'm like, all right, let me listen to this person eating. Cause if it's from the get go, I'm like, this is going to be a problem. I'm out. It's very sad.
Adeel [64:28]: Yeah. Showstopper. Right.
Denburg [64:30]: Yeah. that's a red flag for me like in a way that other people might be like oh this person i don't know was in prison i'm like listen i'm i hear them chewing even with the mouth closed i'm done they're a very nice person and that they'll find somebody very wonderful right right
Adeel [64:48]: Um, okay. Yeah, that, that, that, yeah, that makes total sense. Um, and, uh, okay. Yeah. And I'm curious, uh, uh, well, you also, you said you were kind of an artist your whole life. Was art ever like, um, something you would you know you obviously you know we all try to retreat um to kind of um get over the get you know recover from the amplitude of trigger was art ever kind of like a kind of a therapy a way to kind of not just express yourself but get over some of the things you're feeling i think again the answer is yes but but not directly or
Denburg [65:27]: I think it was very directly. I also think it was not misophonia related. It was my bullying related. So I'm a singer, not professionally, but I sing. I would write songs constantly. I still have all of my notebooks from when I was a teenager writing. And they are kind of journals in that regard. But they're very, very sad. And it... even looking back on it, it's very clearly about what was going on in my world outside of the house and not so much the misophonia or the triggers and things like that. That was just kind of still my assumption at the time was like family annoyance. I can't stand to be around them. Yeah. So I think yes, but not, not in that way.
Adeel [66:18]: Gotcha. Okay. Okay. Yeah, anything else you kind of want to share with people who are listening? You obviously gave us a little bit earlier, but is there something in your notes that you want to get out there?
Denburg [66:30]: I think definitely I want to give you all the tips and tricks for the earplugs. And I'll send you whatever links to them or putting them into the show notes so people can experiment. And I think... You know, I think the best bit of advice I have, everyone is going to find the coping mechanism that works for them the most, right? Like I have found for me, headphones are a good thing, but not all the time. These new, you know, like iPhone Pro, whatever. with the noise cancellation. That feels a little extra exciting. I just recently decided to go out and get them and I'm like, oh, this is kind of great. But they don't stop the visual trigger, right? So that's still a thing. And earplugs are my only way that I can sleep. I am 100% incapable of falling asleep without earplugs in.
Adeel [67:42]: So that's, I don't know if we touched that. So that's even if you're on your own. Oh, yeah. Okay, okay.
Denburg [67:50]: My own breathing, the rustling of the sheets, any sound outside, a creaking of a wall because the person in the apartment near me has moved. Like, it's just, it's a no-go. It's an absolute no-go. Yeah. Gotcha. Okay.
Adeel [68:07]: Yeah. Yeah. There have been some people who trigger themselves. So that's yeah.
Denburg [68:14]: Thankfully don't trigger myself, but I think it's just now I've gotten so used to not hearing anything that the minute there is the slightest sound, I'm like, well, that's not going to work.
Adeel [68:25]: Right. Right. Right. Right. Right.
Denburg [68:28]: Yeah. But I think. The really, really, really big one, again, that I mentioned earlier, is just not being ashamed to tell people and not being afraid to ask or to offer ways that you can try to be with the people you care about if they are okay to make the accommodations needed for it to be easier for you. Because, you know, my triggers have just... grown like they're my list of triggers i've got a bullet point of probably like 15 things here um and that i'm aware will only continue to grow i hope not tremendously but i i know it's going to as i live in this world um and at the same time as all of my triggers growing and advancing in some capacity and then developing the misophonesia and the whole nine. I am so much less triggered because I have, A, my own space and the agency to remove myself, but I am also surrounded by human beings who take what I tell them seriously.
Adeel [69:45]: Yeah, that comes up a lot where it's like, if you have the tools around you or even the awareness around you, sometimes that's enough to lower the stress level to the point where it's maybe not every trigger is going to get you as hard as it normally would, which is, I mean, it'll take anything.
Denburg [70:06]: Yeah. Oh, absolutely anything. I mean, like my parents, for example, and I say this because I actually moved back to Jersey. to live like 10 minutes from them because my dog, since the pandemic, has just gotten very used to me being around all the time. And I'm like, I can't now leave her like I used to before pandemic times. So I have built some babysitting. That living in New York didn't afford me the same way. And so I see them much more frequently, but like there is the inevitability almost every time I see them that someone's going to forget. right like yeah my dad will open up the fridge and he's not even eating or my mom will be making food and somebody will take a bite of something and all we kind of all have to do at once like all i have to do is like ah and like that's it that's that's kind of it's just like a sound of like guys like
Adeel [71:07]: Yeah, yeah, yeah.
Denburg [71:08]: Or I'll be like, are you eating? Like, I just asked the question. And it is immediately just this, I have zero trigger. I feel nothing. I am aware of what I'm about to see. And they understand my random like sound. And they'll just like spit the food out immediately. Like, I'm so sorry, let me leave the room. Or like, wow. You live in like paradise. I wish I lived in paradise. My dad asked me after we watched Quietly, he was like, so if you could have any superpower in the entire world or not have misophonia anymore, what one would you pick? And I was like, no question, misophonia. No question.
Adeel [71:49]: Right, right.
Denburg [71:51]: I was like, not having misophonia would feel like superpower.
Adeel [71:54]: Yeah, yeah, yeah, right.
Denburg [71:56]: He goes, if you had to then pick world peace or no misophonia, what would you pick? And I was like, to be fair, world peace, but I would think about it.
Adeel [72:04]: I just thought about it like that.
Denburg [72:06]: I would still have to think about it.
Adeel [72:08]: Yeah, well, yeah, right, right.
Denburg [72:11]: I'll subject myself to misophonia if the world could have peace, but I will take maybe 24 hours to get back to you on that question.
Adeel [72:18]: I'm going to have to put that in an Instagram story for a question. See what people say. Cool. Yeah. Sorry. Go on.
Denburg [72:31]: Oh, sorry. I was just going to say my very, very, very last tip really is which other people have mentioned sleep. Sleep is crucial and it's stress. Yes. But sleep is, I think sleep helps the stress even. But it is just allowing your energy reserves to be as full as they can be every day because it is so depleting to just live life. And then truly, weed. I get high at night. And maybe not absolutely every night, but probably most of them. And never... like you know you know the like um commercials that came out in the 90s that's like this was your brain this is your brain on drugs it's like a melted person in a sofa i'm not there i have like the equivalent of like if someone was like i have a glass of wine it's like well how do you feel after the wine but i just i don't drink um and i was trying to explain it to my parents after we were watching quietly and i was like now do you understand why i like to smoke and i said if my misophonia is a 10 at all times and you guys function at a zero, if just being mildly high to the most mild degree puts me at a nine, I will take that 1% drop every single time because I just feel like my nervous system can just unwind the teeny, teeny, teeny bit. And that feels like everything. So I have, I've found that weed has been the thing that tends to help.
Adeel [74:13]: Yeah, that's come up a couple of times recently. For me, I thought it would make me paranoid. It has made me paranoid in the past. I just thought that.
Denburg [74:23]: It might be the strain.
Adeel [74:25]: Yeah, I think that's what it is. Because in other cases, it just made me laugh uncontrollably at Star Trek to the reticon.
Denburg [74:32]: Yeah, I mean, I'm definitely not an expert by any means in any of that stuff. I'm just like, give me something, please. I know enough yet to be able to at least just say it's a strain and then have nothing to back it up with.
Adeel [74:46]: Cool. Well, I will. Yeah, I want you to this. Yeah, this has been great. I'm so glad that you, you know, you and your family have been able to.
Denburg [74:52]: Adeel, this has been wonderful.
Adeel [74:55]: Likewise. Likewise. Yeah. Yeah. I'm glad. I hope this lived up to your, the hype you had. I noticed you were on the call like 15 minutes early.
Denburg [75:03]: All of it. All of the excitement it has. Sorry. I get anxious when it comes to Zooms.
Adeel [75:07]: Yeah, I know. I know. Cool. Well, thank you, Alexandra.
Denburg [75:11]: Thank you so much. It was wonderful to meet you.
Adeel [75:15]: Okay, it's me again now, back in the present. That was my interview with Alexandra, and now here are her parents.
Denburg [75:24]: Hi, I'm Ina. I'm Alex's mom. I'm 65. I live in Verona. New Jersey. New Jersey, suburbia, and I am a home chef with a personal business, I guess we can say, right? Oh, wow. I'm the soup lady. But that's what I'm currently doing.
Adeel [75:49]: Cool. Well, if you want to promote it, I'd love to put it in the show notes.
Denburg [75:51]: No, no, no. I don't want to promote it. It's a closed, quiet, beautiful thing.
Adeel [75:57]: Okay. I will cancel the Super Bowl ad.
Denburg [76:00]: Yeah, really sliding into retirement. So that's... And that's because she's following in my footsteps. That's right. I just retired from teaching high school. And I'm 16.
Adeel [76:13]: great okay cool well um yeah so you know just looking uh at you know we were just heard from from alex and uh i guess going back i mean there's a couple things that kind of caught my attention um i know that uh um so there was this i don't know if you remember there was this apple biting incident in massachusetts which seems to have been a um A defining moment. It was a family friend, not someone in your family. But I was curious if you kind of remember that incident.
Denburg [76:46]: So the truth is, and this is perhaps going to be an offshoot of something that will give you the next idea for your next research podcast project. And that is the horrible reliance of memory. Memory is worthless as far as I'm concerned. It's amazing. I do not remember it. Alex, and then Ronnie, you can say whether you do. But Alex, we remember it as a generalization, but not a specific life-altering incident that it was for Alex to be receiving it.
Adeel [77:29]: okay so that that's my you know but definitely a very strong general feeling with this particular person Gotcha. Yeah. Yeah. And the memory, interesting you mentioned memory because that was brought up as well. Like, you know, she does, there's a lot of incidents around that time and she doesn't quite remember the order. One thing she does remember or says that you remember is the other, another incident where I think it's strange how specific this was. You were both going upstairs and you looked back and she said something along the lines of, I don't feel like myself. And then that's kind of struck you as something, I don't know, what were you thinking? Were you thinking, did you somehow connect it to the misophonia or just curious why you remember that one?
Denburg [78:17]: Yeah. You know, it's something I've thought of several times as a memory wisp. I mean, do you have, you know what I mean? When I say a wisp of a memory, it's something that's a very clear snippet. And I have nothing to connect it to before or after. And Alex, when I've shared it with her, did not have any memory of it. So it was clear. And Ronnie was not in the room to my remembrance, okay? And you know how some things just... stick with you as something other than that's in quotes and air quotes, other than it stood out. And there was no way for me to attach it to misophonia because at that time, we, no one knew, including, I mean, Alex may have known something was going on with her relationship to sound and being with people, but we didn't know. And I mean, she was really, oh my God, maybe, I don't know if she was in sixth grade or seventh grade.
Adeel [79:34]: Around 11-ish.
Denburg [79:35]: Yeah. I mean, how old are you in sixth grade? I don't even know. Is that it? So it was definitely, you know, pre on the cusp in that liminal place before puberty. So, you know, everything is changing. But it was so clear and it was a distressful thing. It wasn't something that was a happy thing that said, I don't feel like myself and I'm flying up the stairs in glee. It wasn't that. I just remember that it was something that came off of something that may not have been pleasant or good or enjoyable in life. And I don't know what, but when she went up the stairs, I could see her going up the stairs and making a face to me that was a smile that was not a real smile. And that always stood out even now, even though it's like smoke, trying to see an image out of smoke. But, you know, it made my hair bristle, but I didn't know what to do with it, which is, I think, so much of life or being a parent. You know, you're busy trying to assess something, and you know you're holding it, but it's falling through your fingers because you don't know what to do. It's like something strange. That's it. That's all I've got.
Adeel [80:59]: Did you try to ask more at the time?
Denburg [81:04]: No, which would have been the appropriate thing to do and the completely sensible thing to do in retrospect, the deal.
Adeel [81:13]: Well, if you were maybe freaked out, I can understand how you... I don't even know what I was.
Denburg [81:19]: I was busy kind of just taking it in and feeling into it, but I don't even remember any more than that's a lie and I'm making it up because I have no memory.
Adeel [81:28]: If I can interject. Yeah, yeah, of course.
Denburg [81:31]: And if I'm taking you off track, I apologize. You can come back to this. But talking about memory, what came out a couple of weeks ago is Aina and I have a very strong memory, in quotes, of when Alex discovered she has misophonia. And it completely differs from her memory. And our memory is she was at Penn State at the time. She went to a football game. She had to leave because of the noise level. She went back to her room and she was Googling decibel levels of major football games. And in that process came across an article dealing with misophonia. She read it and immediately called us crying, saying, this is real. I know what I have. It's not just me. It's a thing that other people have, you know, and So for Anne and I, it's a very, very strong memory. And it's so interesting for Alex. And it's not the same one that she has, which we've discussed more than once. Yes. So part of this is in Alex's memory, we had sent her an article from the New York Times. And our memory, she sent us the link. That's right. So, I mean, we'd have to go back on our computers and see maybe who generated it first, which would be interesting if we could do it. Oh, and Alex said we sent it to her in the physical mail. So who knows?
Adeel [82:58]: Right. She said there was something about, yeah, the physical mail. And then someone sent it to her and then she unwrapped it slowly or something like that. I think, yeah, I think that was the... um that was the recollection but yeah very very interesting uh by the way we had uh i had um i don't know if you heard it but i had the author of that new york times article on the show like earlier this year at some point so it's interesting to kind of get her perspective of oh that is interesting i'd have to go i'm gonna have to listen to that one now Joyce Cohen was the author. The audio wasn't that great because she was busy recording a speakerphone, but it's still super interesting to kind of hear how that article came about. Because it had an impact on thousands of people.
Denburg [83:46]: I can only imagine.
Adeel [83:48]: so yeah so getting back to alice so um you know another thing that struck me as um we were speaking was um you know obviously she had a lot of out outbursts like many like many of us do growing up but i was struck by how it just kind of calmed your reactions where i mean obviously you didn't know what it was But it seemed like, and she kind of mentioned kind of, you know, very liberal Quakerish kind of, you know, parents that she had. But yeah, she said that, you know, you were always kind of asking her to kind of reframe maybe how she was feeling and things like that. So I'm curious if you... If you ever had the urge to kind of like snap back and then you maybe talked about how you should react to it or just kind of how you figured out to just kind of react calmly. Or maybe that's another thing that she's not remembering, right?
Denburg [84:37]: Oh, yeah. So let's get one thing perfectly clear, okay? Calm and Ina are not necessarily synonymous. So that was a loving memory and perhaps something that again is... with adulthood.
Adeel [84:57]: Or partial truth.
Denburg [84:58]: Or partial truth. But I don't think there was anything calm. I mean, we should probably both do a discussion, a short discussion. I'll give my two minutes or one minute and then Ronnie will go and give his because it was... awful. It was horrible. It was disruptive. My reaction was all of those. And Alex's reaction was all of those. It was hurtful. It was painful. It was everything that all of you who suffer from this and live in a family unit must experience. I don't believe it was calm. Okay. Because not only did we not know, we knew there was something going on that was clearly disturbing to Alex. There was no doubt about that. What we didn't know was two things. We didn't know how disturbing and painful it was, truly like physically painful. That understanding is actually recent for me and has been informed by your show through offering, I think, greater exposure with so many people who laid down so many different experiences with vocabulary that was able to really cushion Alex's discussion with us and augment it so that was one thing I had no idea that you know a painful sound in the car with like somebody crunching or whatever the heck it was going on was reverberating in her head nor did she have any ability to share that experience with us. And we always thought that this lack of transparency on her part was some power play. It was some like bullshit thing going on. Like you ornery, like pain in the neck kid. How dare you talk to me or your sister that way and we're trying or whatever. So we were not calm. I was not calm. And I think I was everything. across the board at different times. There was only one thing that was consistent, I believe, that was the saving grace and that there was love in it, at least afterwards. You know, there was always some attempt, I think, in unwinding what was wound up in the moment that I or we were not able to deal with. Does that make sense?
Adeel [87:48]: Yeah, so you were, yeah, like in the moment for all sides, it's impossible to kind of see the light at the end of the tunnel, but there is always a moment when everyone can take a deep breath that you were able to recoil.
Denburg [88:01]: And just try to look at something, even though we didn't get anywhere, but we always thought, I mean, and here's one last thing, and then it's Ronnie's turn. You know, my, on top of everything else, at one point I was, teaching mindfulness-based stress reduction, all right? I did this clinical internship and I was working in a hospital and blah, blah, blah, and meditating, meditating, right, for this period of time. So I just kept thinking, well, all Alex needed to do was learn to control this with mindful awareness that this would, yeah, and that is what would be the frustrating part thing I'm sure that she would hear from me or the expectation that Ronnie and I wanted of her was you just can't snap out at us you've got to have some self-awareness because um you know we don't think you have any awareness of what you sound like and feel like to us even though there wasn't the ability for that
Adeel [89:08]: Right. The irony is we feel like we're maybe overly self-aware and are wondering why other people can't notice these sounds. And yeah, it isn't until later, even on our side, I think that we... once we find out that it's a real thing is when we start to realize, oh, okay, it's actually not other people's fault. And, you know, it still causes a problem, but it's, yeah, I don't know where I was going with that.
Denburg [89:38]: No, I appreciate hearing that because here you're speaking like a spokesperson because it definitely, to this day, a deal, to this day, there are many times I forget that what I am doing can cause harm or pain or discomfort in Alex in the everyday whatever. It seems almost natural. It's like saying to someone, you can't breathe. So therefore, if you're standing around food and I go to pop something in my mouth and it crunches and I forget, how could I possibly forget? And guess what? I forget. Right. Yeah.
Adeel [90:20]: And I'll just say one thing. I mean, and I don't know, you guys probably aware of this. I mean, even if you forget, honestly, like just the fact that you're aware and you can show that you're aware that it might cause a problem or it did cause a problem. it makes all the difference in the world. Because I think what we feel is this danger. We feel this danger that something is going to, that sound is somehow going to strangle us. And so if in any way we can understand that the person making the sound or the sound itself is not a threat to us, that really helps reduce, at least for me and people I've talked to, reduce the symptom.
Denburg [91:04]: sometimes you try to make the sound and then you try to hide that might make it worse because it's like it it's that sound is just kind of left in the air um and sorry ronnie yeah i'm sorry um my remembrances are we would often snap at alex uh our you know when you're a parent you know every every human is a little bit different and children are constantly changing So when you're a parent, whether it's an infant or a teenager or an adult, you're constantly trying to figure out where they are and what their needs are and how to meet them. And at that period of time, we thought, you know, when Alex was, you know, 10, 12, 13, whatever, we thought she was just being an asshole teenager. And so, you know, we would absolutely snap at her. But clearly there were other times where we would try and deal with her and the situation in as helpful and normal way as possible. So for instance, I have many memories of Alex saying, I can't eat dinner with you, I'm going upstairs. And we said, you know, basically we said, if that's what you need to do, it's sad that you have to do that. Again, we had no clue that there was a thing called misophonia. So, you know, it was a combination of, you know, saying to a young teenager or a tween, You know, you can't behave like this. It's inappropriate. And other times trying to understand and, you know, have the family get along without yelling. Yes. And we bought plastic utensils to help because one of the things that really bothered Alex was metal, you know, hitting plates. You know, the other thing that you brought up is that You know, people with misophonia don't realize, or certainly when they're young, other people aren't hearing the world in the same and reacting to it in the same way. And it's sort of like, you know, being colorblind or I see grays and greens slightly differently. And how are you supposed to know how another person perceives the world unless and until something becomes so evidently different that you go, aha, you know, we are dealing with the world differently. And there's no reason to try and explain how you're perceiving the world to somebody if you don't know there's a difference in the first place.
Adeel [93:34]: Right. That's a great point. Yeah, that's a great point. Yeah, and I often wonder what it must be like. I mean, I'm sure I was a kid with misappointment at one point, but it's fascinating to think about what kids are thinking as they're going through these incidents. And it's frightening. It's almost kind of frightening to think about, especially if the parents are not necessarily understanding. It could be quite a difficult situation, as it is for a lot of people.
Denburg [94:07]: It was for us. And we didn't understand. We recognized, but we didn't know what we were recognizing. And it wasn't until Alex identified, as our memory is, that she self-identified. herself having misophonia when she was around 20. I brought her to an audiologist down in South Jersey who was fascinated at the time and doing research on Alex and wrote an article on her for the research because she had not heard of misophonia. It was that new and she was trying to treat her with pink noise as they do with tinnitus. But whatever, that's like a side thing.
Adeel [94:55]: Yeah, no, no, that's super interesting. Yeah, I mean, that raises another point. Sometimes we try to go to see a doctor or a therapist and it's usually a crapshoot as to whether they even have heard about it. And then either way, you never know how they're going to treat it or react to it. So at least this one took some interest.
Denburg [95:17]: Adeel, I have an amendment to make because Alex is here. Hi, Adeel. I'm being very good. But guess what? Alex's memory is amending this and I'm accepting it because just FYI, she's saying that all changes and accommodations that includes the plastic utensils occurred after the article. After the article, whomever it was who brought it to whomever's attention. But after that article, which clearly is saying this is a condition, this is a disorder that brought so much more awareness, empathy, compassion and understanding that that's when we started to make. the changes that Alex just wanted to amend. So that's worthwhile.
Adeel [96:12]: Okay. Amendment accepted and ratified.
Denburg [96:14]: Yeah.
Adeel [96:16]: Well then, okay. But then the next thing I wanted to talk about then, you know, from around that time and was the bullying came up a lot. And I bring that up because, you know, as you probably heard, bullying. And I bring that up because as I've talked to more and more people and I've talked to now some local therapists who are interested in understanding what's called small T trauma, like, you know, various types of trauma at a young age. I'm just curious if there, if you feel like maybe there was any kind of link between what Alex was experiencing with bullying and some of the sensitivities that she, you know, the mispoint basically. Because a lot of people I've talked to, maybe not in your case, but they've had maybe a parent who had anger issues or they're dealing with a death in the family around the time that their misophonia symptoms occurred. I'm just curious if any of you have thought about maybe the bullying experiences maybe had caused something. Because a lot of people tend to go inwards and maybe are... Maybe there was some unresolved trauma that could have triggered this.
Denburg [97:39]: I'm going to answer this one and Ronnie can amend and also answer anything, but I'm going to share something that I got permission from Alex to share. Okay. So I have a theory and I would love your neuroscientist who I listened to. By the way, we're going to support that group, the research. to look into this because I absolutely believe, and I've heard several of your interviewees discuss trauma. I absolutely believe trauma is indeed part of it. And you're not going to believe this, but here we go. I believe this is my working theory. I believe that Alex had a beautiful, you know, natural childbirth was super healthy, yada, yada. and was nurse, was breastfed until she was 22 months old, upon which I abruptly weaned her, which in retrospect, I didn't need to do. I was taking antihistamine. But in any case, one doctor told me to stop nursing. And the pediatrician who I called 24 hours later said, are you kidding? Just drink more water. Nevertheless, I was so exhausted from nursing and life because alex was an intense baby all right so she was hardwired that way super smart super creative super aware unbelievably dexterous at a very early age she had a full vocabulary like 60 words at 13 months um and very observant okay in any case, and very connected to me. At 22 months, in that first day that I stopped nursing her, she cried like I had died. And I cried like I had died. And it was horrible. And Ronnie and I made a parenting decision. After we spoke to our beloved pediatrician, which we didn't discuss this part with him. In retrospect, it might have been a good idea. But we thought, oh, my God, listen to how she cried. You know, I don't know if you know about barbarizing your babies where you're supposed to let them cry at night for three days and you don't pick them up or anything. So they learn how to self-soothe and go to sleep. We could never do that.
Adeel [100:21]: I've heard about it. We could not do that either. Yeah.
Denburg [100:24]: No, no, no. Okay. So that was not our style. And so 24 hours of torture, not every moment, but at night, my God, through the night, there was just a lot of grief and it was real. And Ronnie and I thought, oh my goodness, we're going to create a monster. If I go back and nurse her, she will cry for everything. Never give up. And then. She'll know that that kind of wretched crying, she'll be able to get anything in life. It was just such a decision that we made thinking we were making a good decision to not go back. And so clearly she understood a certain amount. And I kept saying, mommy's sick. I'm taking medicine. I love you. I'd hold her. I mean, I was doing everything but allowing her to nurse at night. Okay. A deal. I believe that that set off trauma in her nervous system. And it was the first layer of trauma that blew out her nervous system. This is my theory. I have nothing but anecdotal evidence to support it. But I believe it is strongly as I know the sun rises in the east and sets in the west.
Adeel [101:46]: No, I mean, this is not, you're not unique. I've actually, I mean, yeah, I was talking about somebody who specializes in unresolved trauma. She has this funny too, and this is a strong interest of hers, is connecting this funny to unresolved trauma. And she said, you know, it could be, unresolved trauma could come from childbirth, the actual, you know, the birthing event and things like, yeah, weaning. I mean, that's definitely a traumatic, could be a traumatic experience. So I think you might definitely be onto something here.
Denburg [102:14]: and so you too because and so for everyone who suffers from misophonia um and that is that was just like the first layer she was also super hypersensitive i mean which in retrospect i think gets treated differently 20 years later there's so much more information about whatever, desensitizing, swaddling. I mean, Alex, you know, couldn't stand the wind in her face or up her sleeves in cold weather or had to have the sock over the toes, right, Ronnie? Like so perfectly aligned or else it would drive her nuts. These were just little things. Little big things that, you know, you couldn't go sleigh riding if, you know, with other kids because the wind would bother her. And it was real. And we always just thought, oh, my God, like what, you know, like this is too much, you know. But so that started it as far as I'm concerned. And then the bullying was yet all the other layers that were laid down on an already hyper sensitive, traumatized nervous system that, of course, I never. connected so much until so much later in terms of misophonia and even that incident of weaning her as being the absolute beginning you know and that bullying began in preschool when there was a kid who would i don't terrorize terrorize if you ever tell your parents i'm going to kill you yeah yeah and she did oh my god it was awful and and i even think we handled that Incorrectly, ultimately, not hard-lined enough. The school helped the victim, Iser, and not the victim. And, you know, so there were multiple things of bullying that went on in her life, ones that we weren't aware of either.
Adeel [104:19]: Or she would tell us about things and we just thought it was, you know, blown out of proportion.
Denburg [104:27]: Yeah, like that happened so many times. And I don't know. You know.
Adeel [104:35]: Yeah. No, this is interesting to get this. Yeah. Get this background.
Denburg [104:40]: I mean, you know. Bad memory, as I'm sure you have. Everyone has horrible memories in their life. And I've even tried to verify my own like with my mother and she doesn't remember them at all. It's like, what are you talking about? You know, so here's Alex maybe sharing a memory of bullying and being singled out for any number of reasons. And she was.
Adeel [105:03]: yeah speaking of speaking of other family members uh i don't mean uh and we can come back to this later later but i didn't want to i don't want to forget asking about like other family members whether it's the siblings or you know you probably haven't said more to maybe extend family like have you noticed any other um because some people think that there's maybe some Genetic. Yeah, genetic slash epigenetic, I guess, is the term I've heard where it's like there's a genetic mechanism, but then also maybe something environmental like these trauma experiences that could activate something that would have maybe stayed dormant. I'm curious if you've noticed it in other family members.
Denburg [105:46]: In talking, you know, once we've told people Alex's misophonia, it's come up in several of our relatives. to some lesser greater degree. So that means- No one's greater. That's true. Okay. My brother maybe was on par in his own. Yes. So therefore I think it's genetic and not epigenetic because they're from different sides of the family. Yeah. I mean, there were hearing sensitivities on both sides of the family. You know, my brother had to sleep with cotton in his ears all the time. Ronnie's sister and- Nephew. Yeah. Sensitive to hearing things. I don't know that anyone had it around the bell curve of food, you know, but they definitely had hyper hearing sensitivity, not nearly as egregious.
Adeel [106:48]: gotcha okay interesting and that nephew is probably around the same age is it like a cousin of uh 10 years old 10 years older okay i'm curious so do you guys is this come up in uh family conversations and stuff pretty pretty regularly or uh um which stuff oh just the misophonia across you know once in a while yeah no but the but as but as a side note as a result of your podcast um
Denburg [107:18]: and the transformative awareness and gift of your podcast and how it's helped us, I think, most currently in life. I've mentioned it to several friends and have found out that adults my age now are calling, saying, I have misophonia.
Adeel [107:40]: yeah you know it's yeah it's it's not just right it's not just a one generation well i yeah i might cut this out but in case it offends anybody but yeah i'm hoping we get the same uh marketing people behind autism because that that is like everyone knows about that everyone actually takes it seriously but we're still kind of the ugly duckling of the of the mental health world So I hope one day we kind of get that level of awareness.
Denburg [108:06]: I like to think of it not as the ugly duckling, but as the new duckling that everyone has to be aware of. And that's what the education is, which is, again, I just think your service is amazing.
Adeel [108:19]: Oh, thank you. Yeah, no, that's a compliment.
Denburg [108:22]: It's like the support group.
Adeel [108:24]: Well, it's not just Sport Group. I mean, it's because you can find, I mean, you can find people on social media, but I think diving deep into some of these memories, whether you remember them exactly or not, I think is, you know, people, people listening, you know, people listening tell me that, you know, they heard something and they're like, I literally just had that conversation yesterday or 20 years ago, you know, verbatim. And so it's really interesting to kind of hear those. almost kind of hear a mirror of yourself, but it's not you, it's somebody across the world.
Denburg [108:56]: Exactly. I totally get what you're saying. And I know how important and helpful it was for Alex and then how helpful it was for us to listen to half a dozen in a row of people that you interviewed that she said, listen to this, this, this, and this person.
Adeel [109:11]: Yeah, just hearing the different vocabulary describing how they react to sounds.
Denburg [109:16]: I mean, everybody was individual and yet everything is unified under this umbrella of similarity. And it is really helpful for me as a parent, as a person.
Adeel [109:29]: So I guess, yeah, I don't want to take too much of your time. I also don't want to make this episode too long, but it sounds like you've had a lot of time to think about the traumatic nature of it potentially. Maybe there are some other insights or some other kind of things you've thought about that maybe you want to share with other parents in particular who might be listening. because I do get a lot of mail from parents wondering what this thing is about and what they can maybe do to kind of like help guide their kids. I think the only thing one can do is talk to their child to see their child's perception of things and what's bothering them and when and how and for the family to accommodate as best they can.
Denburg [110:18]: I mean, it'll never be 100%. But How could you not want, no matter what the person child's condition needs are, why would one not want to help them to whatever extent is possible?
Adeel [110:37]: Right. That's the interesting thing. I don't mean to cut off if I was going to say anything, but the interesting thing is we, you know, I'm a parent too, and we do that for pretty much everything else. And it just seems like misophonia comes up as one of those things that gets dismissed as, oh, it's like, you know, of course everyone doesn't like the sound of nails on a chalkboard kind of thing.
Denburg [110:55]: Yeah.
Adeel [110:57]: We don't, for some reason, and maybe this is going to change, but we don't put this in the same category as all these other things that we're used to, you know, trying to accommodate our children with. So I'm hoping, yeah, like, I mean, I like what you said, Ronnie, in terms of advice for parents to kind of like just take it seriously and want to try to accommodate and listen to what your kids are saying. All people to all people.
Denburg [111:26]: That is the part that is about education, understanding, and also the help is so age dependent. If Alex were 11 or 13 and we were first hearing you, it would be totally different than her being you know, 30-something-year-old now in the world. I don't know what it's like for other or what it was like for Alex in the lunchroom and what in the world she had to put up with. I mean, I know for a fact that years ago, this is post-college, Alex is here, you can correct this, but one time Alex told us that At the time, she felt it took about 90% of her resource to be in the world with this, with misophonia, and that she had 10% of her own resource to apply to the rest of her life. Do you remember saying that? Okay, so she's in agreement. I thought that was during her college years. Yes, but that's how you don't. And that is mind-boggling.
Adeel [112:46]: Was that just day-to-day or during a trigger? Was she describing?
Denburg [112:51]: No, this is day-to-day when I am out in public. Yes, out in public. I'm probably less now because I'm not around as many people now. And the people that I'm around more frequently are my parents. Well, it's a pandemic year and everything. It's not like I'm going out and doing a bunch of stuff. So at least the accommodations are being made so my resources don't have to be as on guard all the time. But yes, when I am out in public and there is a potential for something, I am on high alert and it's exhausting. Which I'm sure you can understand.
Adeel [113:31]: I totally agree. And that's why I've worked from home for long before.
Denburg [113:37]: Right. And clearly that pattern of being self-employed is something that, you know, I've heard is the pattern. But to answer your question, for parents who are listening, depending on what the age of their child is, if they have a teenager in school, I mean, now... you know, with the backing and the science of how real this is, quote, I say real in terms of it being validated by science, okay? I could first see going into school and making sure that if Alex said, I can't be in the lunchroom or I can't be, you know, I mean, we also heard, maybe she said on your show, she had a... class in college that she couldn't be in uh one of these big auditoriums because of the the sounds that were in the room it was a math class that she had to drop out of and she didn't even have the vocabulary then to tell the professor why she couldn't be in the class because of these sounds either people were eating or lunch or something or breakfast Or there were, you know, sounds around the room.
Adeel [114:48]: Well, they always have, there's at least one person every corner that has to be coughing. So it seems to be mandated for most colleges and universities. So that's probably why.
Denburg [114:59]: But you know now how there are so many accommodations made for multiple ways people learn what, you know, sensory, auditory, this, that, the other thing. And there's a million things. This needs to be added to the list in order. to make environments workable for people who have an awful lot to offer and learn to and from society so that, you know, I just can't even imagine what it would be like being a parent now of a young person where I might have more agency to go in and request or attempt to make a situation work better.
Adeel [115:42]: Yeah, you're right. It's challenging. And luckily, I mean, misophonia does fall under ADA, which is a pretty general umbrella. And there are things called 504 accommodations. The thing is, it's usually people who know about misophonia. The problem is people are going through high school not even knowing what it is. Absolutely. And you're right. I've been trying to, I'm advocating for... training school counselors at the district level. But what we have to try to recognize in kids, because if this messes up your high school, I mean, this has repercussions beyond just being too sensitive to sound. This could just completely destroy your career and all your revenue, all your income. for the rest of your life and uh that has all kinds of repercussions so um yeah we're trying to trying to get to people and parents um at younger and younger ages to try to intercept and uh and change lives you know ideal this is not for the show this is for the future okay i'm saying something right here because i'm thinking it
Denburg [116:53]: you know, I'm going to retire at some point. I would be really interested to work with you to help try to think of how to educate and bring this to whatever it is in order to get it out, like into the schools or I don't know, just saying, okay, that's all. She's good at it. No, I just think that that may be a mission. And why not? My goodness. That's what we need. You need. No, that's great.
Adeel [117:19]: And maybe I think we'll, yeah, we'll talk after I'm on the... the board of an organization called soquiet.org. And somebody else, Chris Edwards, who I interviewed, he's running that. Dr. Zach Rosenthal, who was on the podcast, he's on the board too. And one of the missions is, yeah, training HR departments and school boards and whatnot, anybody to kind of learn more about it. And he's done some seminars at the local public libraries. And that's another avenue of where I think they're receptive to providing a space for people to talk about misophonia and do some training. So it might be interesting to have to kind of maybe get your involvement, your ideas, and maybe have you participate in that in your part of the world. So yeah, definitely we should talk about that. Okay. Cool. Well, I guess, yeah, I mean, we're, you know, to kind of wind up, that's kind of great advice. Anything else you kind of want to share with folks about your experiences? I just wish we had known more.
Denburg [118:36]: I wish misophonia had been identified earlier. Yeah. So we wouldn't have had to go through as much crap as we, and Alex, as we've had to. And And it would be great if in parenting classes. Absolutely. People could be. Pediatricians need to know. I mean, this is like the kind of stuff. That's what I mean. This needs to be a public service.
Adeel [118:59]: Yeah. You know, it could be too late by the time you get to school.
Denburg [119:04]: Absolutely. In order. Yeah. Period. In every venue that one educates on. On something that is new and is. bolstered by the efficacy of, you know, the science, which everyone, you know, the neuroscience, of course, makes it so real. And I don't know what else to say other than you can't imagine how profound it was. for me and Ronnie in a cry just talking about to have heard your podcast the deal I really want you to know and it had to come from someone like you that's what makes it even you know you're the sufferer and what you're doing in connecting other people to talk about something that doesn't yet have the understanding of society. I mean, I can imagine it with every subgroup, subculture, you know, anything across the board. And in my life, misophonia is a real thing as a parent. And it has been such a horror to have to live with. And it just grew the empathy. of what it must have been like for my child to have to live through this. And all of you, it's such a freaking curse. And at the same time, there's something also so beautiful and positive about the toolbox. That's like the only silver lining so far I've heard is even though the amount of sounds get added into this darn continuum of, of like more and more sounds and visuals and everything else amplified as you get older, which is so cruel, but thank goodness. The toolbox seems to also, what I've heard from people is the coping mechanisms grow. And with the understanding, it just, you know, trying to put together the best life one can, since everyone has something. Yeah. society will become more aware and more accommodating to make people's lives more livable.
Adeel [121:33]: Yeah. I appreciate that.
Denburg [121:35]: It's so important. I don't know what else to say to parents, except if they ever want to call and talk, they'd be available. But other than that, it's hard to be a parent of it and not know what's going on. And it's hard to be a sibling of it. We didn't even talk about that, the sibling situation.
Adeel [121:58]: Oh, right.
Denburg [121:59]: I mean, that's like family dynamics, family psychology, family unit stuff. I mean, we had therapy, which we didn't know was being focused on something that we didn't know what it was. There were so many dynamics involved. I mean, it really is complex. You know, I mean, the younger sister was always trying to, I don't know, you know, this one was the peacemaker. If anything you want to add to that, Rowans. I mean, it was a fifth person in the room. Misophonia. It was a fifth dynamic. It is. You know what I mean? It's like... Especially when you don't know why the child is reacting as they are. And then... It would just become pounded with the lack of a proper response. Alex didn't have, and this is no fault of her. She just couldn't even say what was going on. And so we were left to make our own story, which is the worst thing in the world. We never wanted to do it because, you know, you can't build a reliable narrative on an assumption. Because it's wrong. Like whatever we assumed was the reason was not it. And so we were making up a story about our child that we didn't know what to do with.
Adeel [123:32]: I wouldn't call it a... You were making the best assumption that you could. At least you were trying to.
Denburg [123:40]: We thought she was a jerk. Okay, that's a bad assumption. Our kid is a jerk. She's an asshole. I mean, she's an ornery teenager. Why is she such a... Name anything. But it... had real reason that we weren't really getting to.
Adeel [123:57]: Right. Well, I mean, I just want to say, I mean, thank you for saying those nice words about the podcast, but I mean, in terms of another silver lining is, I mean, Alex is here in the room with you. You know, it's not like it totally broke apart your family.
Denburg [124:10]: Oh, not at all.
Adeel [124:12]: Not at all.
Denburg [124:14]: That's what I'm saying. I mean, that was the only thing that it hung on, I think, which is what parents, that's my public service to parents. Don't stop loving your child on any account. Just even if you don't think you're doing it right, you know, just make sure they get a ton of hugs and the best possible. And to try. I don't know what. Always understand. Even when you don't, which is sort of worthless. Again, it's hard to understand because, you know, parents. If you don't know what might be wrong, then you can't ask the appropriate questions. But nonetheless, you just have to keep probing in as loving a way as possible to figure out what the fuck is going on. And at least now, if they went to a pediatrician who's half awake, they're going to know there's misophonia.
Adeel [125:06]: Yeah, some of them might.
Denburg [125:08]: You know, I mean, you're right. Some might and many won't. Like we went to the audiologist for Alex and all we got is, oh man, she had perfect hearing. You know, it's like, yeah, we could tell you that.
Adeel [125:19]: Right, right. Yeah. Yeah, I mean, I mentioned it to my doctor, and I guess I get a blank look too. But I'm always like, I just want to see it written in some database so that if somebody is doing research in the future, and they do a query, it comes up. And that's my contribution, even if my doctor doesn't believe me, at least put it somewhere that people can search for it. um because yeah it's it's not well known enough and um and um you know hopefully yeah hopefully one day one day it will and i'm probably you know it's probably too late for me but yeah like you said that pediatricians i'm hoping should be more aware of it that's that's an interesting point i'm gonna i'm gonna try to advocate more for um yeah i think training for pediatrics yeah yes because it's got to start early in parent life
Denburg [126:11]: Absolutely. So that when it comes up, it becomes something like, and I'm going back to autism. I mean, you know, people are just have such an awareness because obviously it's, you know, ubiquity has necessitated it. But, you know, I guess the information that's available now, the more it's disseminated, the greater the understanding and the more the quicker it can be absolutely and and hopefully kept at the most minimal of pain for everyone
Adeel [126:50]: right right well and then i think um and you know i guess maybe one final thing i'll say is that um you know if you catch it earlier maybe you're not maybe you're not uh protecting just from misophonia if it's indeed related to some uh um unresolved trauma you could be helping many other things that you know uh within misophonia so that's i think it's important it's just important to be aware of what's going on with your child growing up in general
Denburg [127:18]: And you know, you just sparked, and yes, to everything you're saying, but you just sparked something else. You know, there's so many somatic therapies now. I mean, that is the new psychotherapy, is the somatic awareness, right?
Adeel [127:33]: I just read a book by Dr. Levine about that somatic expressioning or something like that.
Denburg [127:40]: There are so many iterations of it, and it is such a deeper psychology of healing. that goes beyond just, you know, the words and the actual memory to then the location deep in the body, which remembers everything. The body remembers. The muscle memory is there. And to have it dealt with, imagine having, you know, if in fact it is from nursing or the first bullying, you know, whatever it is. the more that it can then perhaps be worked with misophonia and somatic psychotherapy. The more that can be contacted and released in the body, if in fact it is a trauma-related event that triggers that no one yet knows. I mean, I'm just posing this, right? You know that it's neurological and hardwired, but you don't know. Like trauma and PTSD, there are things that at least help catch the trigger before it blossoms into a full-blown loaded gun. You know, even if it's one out of 10 times, that's 10% less.
Adeel [129:04]: Right, right. Yeah.
Denburg [129:06]: Anyway, I mean, you sparked that thought in me that that would be yet another thing. for misophonia is to somehow get people volunteering maybe to go in to have somatic therapy with the misophonia in an explorative way. If somebody had the energy for it, I don't know what it's like to have misophonia. So I don't know what that would mean, but it's a thought.
Adeel [129:33]: Yeah, no, I'm sure somebody listening, hopefully that sparks them into action. Yeah, it sounds like an interesting project here to further the research. Yeah, I know, Ronnie, I want to say thank you for coming on. This might actually be its own episode in itself. It's been so jam-packed. But yeah, I want to thank you for coming on and volunteering to come on after Alex. I know you haven't heard her episode yet, but it'll be interesting to get these probably back to back. Yeah, but thank you for wanting to come on and share your experiences. I haven't really had many parents come on very often. So this has been super interesting and thanks for all your insight. Thank you, Alexandra, Ina, and Ron. What a treat to be able to speak to all of you. And I know this is going to help a lot of people. If you liked listening to this episode, don't forget to leave a quick review or rating. Just hit the five stars wherever you listen to this podcast. Email hello at misophoniapodcast.com or go to the website, misophoniapodcast.com. It's even easier to send a message through Instagram or Facebook at Misophonia Podcast. Support the show by visiting the Patreon at patreon.com slash missiphonia podcast. The music, as always, is by Moby. And until next week, wishing you peace and quiet.