Marcelo - Misophonia Meets Music: A Creative Coping Journey
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 6, Episode 8. My name's Adeel Ahmad and I have Misophonia. This week I talked to Marcelo, a composer of avant-garde music who now lives in Germany. We talked about his origin story against the backdrop of turmoil in his home country of Chile and in his own home. being triggered, sometimes on purpose, by his mother, and being punished for his condition in Catholic school. And we spend a lot of time ruminating on expressing Misophonia through art. He's even weaved some of his triggers into the beautiful music that he writes. I'll post a link to his YouTube channel in the show notes. As always, let me know what you think. You can reach out to me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. There may be some slots left to record new interviews over the next few weeks. I've already recorded some real doozies that I can't wait to share. Thanks for the incredible ongoing support of our Patreon supporters. You've helped upgrade my recording software from Zoom to something much better. In the next phase, we'll be working on those transcripts that I keep promising. If you feel like contributing, you can read all about it at patreon.com slash misophonia podcast. And one of the best ways actually to get the word out is just leaving a quick review or rating wherever you listen to this show. All right, now here's my conversation with Marcelo. Marcelo, welcome to the podcast. It's good to have you here. Thank you. Thank you for having me here. Yeah, yeah. So do you want to first, I guess, tell folks kind of where you're located and then what you do?
Marcelo [1:42]: Sure. I live in Germany, in southwest Germany, but I'm originally from Chile and I lived for 22 years in California as well.
Adeel [1:52]: Oh, you did? When did you live in California?
Marcelo [1:53]: What are yours? From 1997 until 2019. Oh, wow. So we're in California. Mostly in the Los Angeles area. Then I moved towards Ventura County and ended up in San Diego before I moved to Germany.
Adeel [2:10]: Okay, so very southern. Yeah, I was in San Francisco from like 2001 to 2016. Oh, nice. Probably when I used to drive down to L.A. once in a while. So we probably did not cross paths, but we were probably in the same general area. Well, cool. So, yeah, you want to kind of tell, what do you do out there in Germany?
Marcelo [2:32]: Sure. So I work as a musician here, as a freelancer musician. I'm mainly a composer, and I also play guitar and teach guitar, but composition is the bulk of what I do.
Adeel [2:45]: Amazing. Yeah, I think we obviously talked over email a little bit over the summer. So, yeah, so initially, did you reach out to me by email, you know, about the podcast? I mean, yeah, how did you learn about the podcast?
Marcelo [3:02]: Do you know what? I was thinking about that this morning. How did it happen? I think I was doing research about misophonia in your podcast back there somewhere. So I joined and then I'm going to go, man, it would be nice to be able to share my experience. So yeah, I think I feel the question or something.
Adeel [3:20]: Yeah, no, that's, yeah, you know, just curious, curious, because we did have a short email conversation. Yes, I'm also, I don't do music for a living, but I'm very much into music and writing music. And so it's always good to hear from other musicians. So, yeah, I guess, do you want to maybe talk about what's the misophonic situation for you now? It sounds like you were doing some research on this. So is there something prompt that? Are things getting bad?
Marcelo [3:54]: Good question. So I feel sometimes like it's getting worse as I age. The first time I was aware that sounds bothered me, I was nine years old and I'm now 45. But I've been doing a lot of research because I am really interested on how I can use this to compose music. And I noticed that when I use some of the sounds that trigger me, they don't trigger me when they're in this context. So I found that very interesting. And then I learned that there was this condition called misophonia and I go like, huh. And I started doing more research about it.
Adeel [4:33]: Oh, this is really interesting. So before you even knew the misophonia had a term, you obviously knew that you were bothered by sounds. But then as you were composing, you started to weave trigger sounds into your work. And that helped you cope. Yes. Or did it help you cope? Or is it that you noticed that the same sounds were not triggering you in the context of a work?
Marcelo [5:00]: Good question, man. So the first work that I wrote using these sounds was in 2012. And I was really scared to listen to the recording. I was there for the performance. I was like, I do not want to listen to the recording. And then one day I had to listen to it. So I was giving a presentation at UCSD when I was doing my doctorate and I had to talk about it. And I'm like, man, this is going to be painful. And I noticed that it bothered me, but it did not trigger me. I didn't have any physical reactions or there was any anger or I decided to run away from the room. So a light bulb went off there. I'm like, okay, there has to be something there. a difference between when one hears the sound versus when one is creating the sound. Yeah. Yeah, absolutely.
Adeel [5:56]: Go for it. Can I ask a little bit about the piece and the sounds? Obviously without making the sounds, but I'm just curious what kind of music was the piece? Was it some John Cage walking on ice kind of experimental thing or was it more traditional but with some sounds thrown in?
Marcelo [6:17]: No, I definitely work in the more experimental, avant-garde type of world. And this piece was a duo for cello and voice. And the text I was using was a fragment of a poem. And all the parts that have the letter S, I made that really, really long. which is a sound that in chile is when people speak they tend to elongate the s at the end And that was one of my trigger sounds. So I put that there and I combined it with sounds from the cello that were kind of similar.
Adeel [6:54]: Beautiful. Can we listen to this somewhere? Or is it on YouTube or Spotify or something? Or was it just for that?
Marcelo [7:00]: Absolutely. It's on YouTube. I can send you the link at some point.
Adeel [7:03]: Yeah, I think I subscribed to you, but I was specifically looking for this. Yeah, yeah. It's so funny because the last, Robert, literally the last... The current episode that's up right now at the time of recording this, it's amazing. His only trigger sound was the S's that his mom would make, and it turned out to basically destroy all the relationships in his life. It's just amazing, that one little thing. It's a coincidence that it's an S sound, just like you just mentioned. I'm not laughing, but I'm sure Robert would find it interesting as well. Interesting, okay.
Marcelo [7:43]: No, but it's, sorry, it is kind of interesting that you're mentioning this about not laughing because for all of us who have been dealing with this for such a long time, it's been a very painful experience, right? But now knowing there is research about it and there is an actual name and that we know that's going on, it's like, oh my God, like I do want to laugh. It's like, okay, people are paying attention.
Adeel [8:05]: You're right. Yeah, laughter is a good coping mechanism that comes up a lot. It is, absolutely. Part of the benefits of having this community where we can talk to each other about stuff that we never dare talk to anybody else about is therapeutic and absurd in a way. It is. interesting okay cool and how did that go over then that piece when you um you know obviously you talked about kind of like how it um you noticed that it would annoy but not trigger you in the same way did anybody how was the reaction uh in the audience did somebody stand up and say oh yeah or or were they you know did nobody notice the sounds or just i'm just curious how that went over
Marcelo [8:51]: No, nobody noticed it. Or if they did, they were very quiet about it, which is the other thing with misophonia, right? Like we think we're alone. The cool thing, though, is I was able to talk to the performers afterwards and explain to them what was going on. And around this time, I wrote the piece on my first year of the doctorate, and it was premiered on the second year. And around this time, this fluidist had come to UCSD from Belgium, and she heard the conversation. And we started working together and we wrote another piece also using trigger sounds.
Adeel [9:27]: Oh, so was she particularly interested in the misophonia kind of, or by that point you didn't know what misophonia was, right? Right, I had no idea what misophonia was.
Marcelo [9:36]: I thought I was the only person in the world that was suffering with this. But it really sparked, she got interested into it and we ended up doing a work for flute and text.
Adeel [9:50]: Wow. Is that on your YouTube as well?
Marcelo [9:52]: That's also on the YouTube. Okay. So the one is called Alpha Cruises. Oh, thank you.
Adeel [10:01]: Yeah. So one is called Alpha Cruises. I'm putting it on YouTube today. Yeah. Cool. Okay. Yeah. I'll send you the links. Sorry. Interesting. Okay. And then I guess then after... Well, have you been doing more, I don't know, more kind of experiments with misophonia in your works?
Marcelo [10:23]: Absolutely. So it was recently that I found out that misophonia was in a psychological condition, which is what I thought it was for a long time. I just recently discovered, and this is about the time that I found your podcast, that it's a neurological condition. So there's something in the wiring. And some of my reactions when I get triggered since I was a little boy was either to slap my elbows or my knees or rub my ears. And for a long time, I realized that when I compose music, I have to be moving. I cannot sit still and write. So when I discovered that I put two and two together, I thought, well, maybe there is a link. between movement, the misophonia reactions, and the way that I work. So I am really interested on starting experimenting with movement, specifically the reactions that I had to these trigger sounds.
Adeel [11:25]: Interesting. So when you're composing, you're moving, does that mean that you're pacing around the room or you're playing and it's being notated separately? I'm just curious how the movement connection with your composing activity. Right.
Marcelo [11:46]: So I am not pacing around, but I like Let's say when you go dancing and you're reacting to rhythm, I'm reacting to the sounds that I'm hearing. So it's very weird not having a camera to explain. But a lot of movements with my arms, with my legs, stomping, the rubbing of the ears come back. Yeah. So it's not pretty to look at, let's put it that way. But it's highly effective when it comes to put all these sounds in.
Adeel [12:18]: and rhythms together gotcha okay no that's that's really interesting and uh and and when you're um do you well maybe let's go back to like do you feel like your you know your your choice of composing as a as kind of a career did it have anything to do maybe with your relationship with sound and triggers early on, like wanting to create sound as kind of a reaction to your... Maybe we can go back and talk about how bad was it when you were a child, like how tortured were you by sounds?
Marcelo [12:57]: Sure. Let me answer the first question first. No worries. But... It's going to be interesting that you ask that because I am the only musician in my family. I'm not talking about just my immediate family, but my family in general, which on my father's side is quite large. I am the only musician. So I think jazz has got to be a relationship between how I process sounds and my desire to manipulate them. Especially in the avant-garde context. I mean, I have played also in rock bands and heavy metal bands but my bread and butter is contemporary music um about going back like i said at the beginning i started noticing this when i was about nine years old and just like with the other gentleman you were talking about uh it began with my mother and when i was nine years old a lot of kind of traumatic events happened in my life by Uncles with my cousins who were some of my best friends moved out of Chile to England to live there. Then the following month, my grandmother passed away. Then my dad left on Christmas. It was kind of like a lot for a nine-year-old kid to go through. And that's when everything started. And first I started to notice in the way that my mom would whistle, which it wasn't a very pleasant whistle. It was kind of like between the teeth. I don't even know how to explain it, but just thinking about it, I can feel it on my back right now. And my reaction, I remember, was to run away. The only place I could go was in my room. But then a couple of months after, my mom realized what was happening. And she would come in the room and close the door and start doing the noise even more.
Adeel [14:58]: Knowing that it bothers you?
Marcelo [15:00]: Yeah, because in her mind wasn't me just being a brat about it. I'm trying not to curse, but just trying to be a brat about it. So whenever she would do sounds like the S, the whistling, the way she would sing or all the other sounds that would trigger me, she would then like purposely do them even more. She had a whole other issues going on with her too that never got treated. That was just the situation in my country at the time, right? Like people did not get treated for stuff like this. And of course, nobody knew about misophony, talking about mid-80s. So it was quite hard. Things started happening at school with teachers. I went to Catholic school. So there was a whole layer, exactly, a whole layer of punishment if you did not sit still. And like when teachers were talking, I needed to move or react. I would get kicked out of the class.
Adeel [16:01]: so yeah no i haven't you might be one of the first people who have actually yeah who um you talked about their catholic school experience and yeah i didn't even think about that that you could yeah if you don't sit still you can just get punished and taken out oh you know we think about catholics in terms of their uh their um propensity towards guilt and so yeah i thought that we were going to talk about like you know the shame and guilt which i'm sure um yes you probably experienced as well but i didn't really get kicked out of class for reacting to missifornia that's uh horrible and obviously uh just does not help the trauma uh that your complex trauma you're facing early on
Marcelo [16:42]: not at all and what made it worse is um aside the fact that we had to use a uniform and all that stuff and yeah we were all boys and the mentality in chile a very chauvinistic country was like okay boys do not suffer from trauma you don't cry you don't complain about anything yeah you need to be tough and And for me, it was horrible. It was really, really bad.
Adeel [17:08]: Yeah. Wow. Okay. And how did... Wow. And were you getting teased also? Obviously, the Catholic teachers were not helping. Did other kids notice your reactions? I mean, obviously, when you're getting kicked out of class, somebody's noticing. Is there any kind of bullying or...
Marcelo [17:31]: Not bullying from my classmates. I mean, of course, there was bullying going on, but not when it came to that. Some of my friends, I mean, I went to the same school from kindergarten until I graduated in my senior year, so 13 years. Some of my friends got to know me very well over the years, and towards the last two years of school, I was able to talk to them about it. Back then, I still thought it was just me and there was something wrong with me. And they helped me a lot. It was a very painful period. A lot of things combined. I'm sorry if I get sidetracked here a little bit. No, no, no. So I've had severe depression too since I was a very young kid. And bipolar number two, which is it doesn't come with the typical manual where you go into shopping sprees and stuff like that. But it's hyperactivity. So all that combined, I felt just like a, for lack of a better expression, such like a pain in the butt when I was growing up. And talking to my friends about it, it helped quite a lot. So of that, I'm very grateful.
Adeel [18:42]: Yeah, okay. So you felt like you were... um you're just a burden and a kind of a pain in the ass to people exactly because that's i mean it sounds like that's kind of what how they were treating you i mean treating you like you were less i guess you know or not exactly yeah right when it came to misophonia the bullying came from the teachers like really shaming in front of everybody yes yes wow but in catholic school that was That's the first rule is how can we shame you? Exactly. And so that's okay. So yeah, so you're later in school, I guess, yeah, towards the end of high school, maybe you found some friends that you could talk to. So what are some of the things, is just kind of talking to them helped or did they help kind of like, I don't know, provide support in any way or just kind of like protect you?
Marcelo [19:41]: It helped to have an outlet and to have people who genuinely listen. Sometimes we would go and drink a beer and talk about it. I mean, there was no drinking age in Chile at the time. So we would do stuff like that. And I was able to talk and cry it out, really. And so having these guys that were able to just listen and put their hands on my shoulder. That was really all I needed.
Adeel [20:09]: Exactly. At that point, how was the home life then? Was your mom still kind of behaving the same way? Sounds like she had her own issues.
Marcelo [20:21]: Yeah, and I came from a family of five. I'm the youngest. My older two sisters had left at that time, also left the country, not just left home. So it was just my mom, myself, and my little nephew. um at some point when i was around 15 my uncle with whom i was very close um had cancer and he spent the last six months of his life at my home yeah so in a way i had to be a support for my mother that was watching her brother die yeah um my little nation didn't have her mom with him or his dad his dad was out of the picture so i became kind of like a father figure for him as he would later would tell me. So it was a lot of pressure and having the depression on top of it and in all the other issues, it wasn't easy.
Adeel [21:16]: It got really dark. Let's put it that way. Yeah, it sounds like a lot. So I guess, how did you, what happened next then? Did you go off to college? Were you still, you made some kind of a career move or a career beginning at that point.
Marcelo [21:33]: Yeah, so my plan was as soon as I get out of high school, I'm going to find a way to get out of Chile.
Adeel [21:39]: Sounds like a common theme with a lot of your family and other people in your family or people around you.
Marcelo [21:47]: Yes, my dad was in the 80s, so that kind of like filled the tooth at an early age. So when I was 18, my sisters had moved to Israel to work there. And the mother of my nephew, she wanted to be with her son. So my mom took my nephew to Israel and I tag along. Originally, the idea was to go for three months and I ended up staying for two and a half years. And right after that, I moved to the States. So I left Chile in 1995 and I didn't go back to Greece until 2007. I went for a couple of weeks.
Adeel [22:18]: Yeah. Wow. Okay. Okay. And then when you, so you went to, okay, so let me back up here. You went to Israel. So what was, did you find when you start to move to other countries was, did anything about your misophonia change? A lot of people I talked to. When they leave school and leave the house for the first time, there's sometimes like a period when it's a little bit better. Maybe it's because things are new and they kind of have a little bit more control over their lives. Did it ever get better briefly?
Marcelo [22:52]: Yeah. So when I moved to Israel, it was interesting because it was a cultural explosion happening in front of my eyes. I mean, there were people from countries that I had never heard before. And all these different languages happening at once. So my brain was like trying to make sense of everything. And I think kind of like the misophonia took a backseat at least for the first year. After a while, after I started settling and getting used to it, then it started coming back again.
Adeel [23:25]: Yeah, yeah.
Marcelo [23:26]: But at first he was kind of like, yeah, man, let me enjoy this.
Adeel [23:30]: Yeah, yeah. And what were some of your coping methods, I guess, actually, I guess, throughout your, since childhood, was it avoidance, getting out of the situation? Were you starting to get headphones going on more, listening to more music?
Marcelo [23:48]: Running away was method number one. And locking myself in my room.
Adeel [23:55]: Yeah.
Marcelo [23:56]: when I was 11, or no, I was 10 years old, and my cousins and my uncles that I told you had moved to England, they came back, and my cousin, the male cousin that I had, they were all students and one boy, he came with a collection of vinyl, heavy metal music, and I have never listened to heavy metal in my life. And that helped me a lot, not only with misophonia, but with anger issues and my depression. So, It wasn't just a desire of making music. Music also played an important role in holding to my sanity and literally at some point saving my life.
Adeel [24:37]: Yeah, yeah. Wow, okay. Yeah, I was going to ask, when you ran away and ran to your room, what did you do? It sounds like the music was an escape.
Marcelo [24:47]: Yeah, blasted full volume. Close all the windows, close the door.
Adeel [24:52]: Wow, OK. Interesting. At this point, how you decided that composer was the career for you?
Marcelo [25:02]: Yeah. Yeah, it was pretty clear that I wanted to be a musician. I didn't know I wanted to be a composer.
Adeel [25:07]: i knew i wanted to be in a heavy metal band and tour the world and lose my hearing by age 30. yeah so did that oh interesting so that was like um so hearing hearing damage was was that was that something you thought about maybe as even like hey if i'm getting triggered by these sounds like why do i necessarily need to be able to hear
Marcelo [25:28]: Oh, man, interesting question. I don't know if this happened to all the misophonia sufferers out there, but it also bothers me when I make the sounds.
Adeel [25:38]: Ah, okay, okay. So, for example... That's pretty rough, yeah.
Marcelo [25:43]: Yeah. So, like, using my hearing, I mean, you can still hear the sounds in your brain. So it wouldn't help that much. At UCSD, when I had to teach courses there, as you can tell, I have a very thick accent. And I had to work really hard on that so students could understand me and pronunciate well and pronunciate the S's at the end of words. And oh my gosh, it was hard. Drinking water, if I drink water and the gulping sound is too loud, it infuriates me.
Adeel [26:16]: Even your own drinking?
Marcelo [26:17]: Yeah. Even my own drinking.
Adeel [26:20]: wow okay yes yeah you're right i mean uh losing your hearing if if not that i condone it but if you were to yeah if you were to lose that that that wouldn't help i don't think in those situations yeah right yeah interesting that's that that's it's amazing that this even comes becomes part of your thought process that's that's what this condition does to people exactly so okay interesting so how did um yeah okay well i was asking something earlier that we got into uh self-triggering um yeah but anyways let's let's maybe let's move on to like uh um yeah so as you were well as you let's talk about as you were a teacher uh you obviously you had to um be in a room full of a lot of other people. How was that for Misophonia? Being a teacher, you know, you're kind of, you can kind of control the situation to some point, but you just have a lot of younger people around who are, you know, I think more and more people are eating in class these days. Did that environment start to be a trigger?
Marcelo [27:26]: Oh my god, yes. Yes. Yeah, I had kids coming with sandwich one time and i said look i i don't mind you guys eating but we are in a music room with a lot of delicate equipment so if you're gonna eat try not to eat something too messy so this kid next god bless his heart next class he comes with a bag of potato chips and i just look at the potato chips i started sweating uh yeah what helped me there is i i can be a very goofy person so I would try to keep the class light as much as possible, and that would help me cope with everything. And then another thing that I started doing later in my program, my program, I mean, my PhD, so I was there for seven years, so like four years into it, I decided that once a quarter, we were in quarter system there, I would spend five minutes talking about not only misophonia, but mental issues, conditions and making sure the kids knew that I had those problems that I had been hospitalized at some point because of that and surprisingly I got a lot of kids to open up and they received it very well so having an honest conversation about what was going on rather than me hiding and saying I'm weird made things much easier and then some kids will stop bringing their food to my class or they would bring food to share with me. So it became a really positive thing in the last four years or three years of my tenure there. Just being able to talk.
Adeel [29:18]: Yeah, that's great. It has a lot of benefits. That's a really positive thing to come out of this. The more we open about it. Because no one wants to talk about misophonia who doesn't have misophonias. But I think it's on us to kind of like
Marcelo [29:34]: you know be a positive force and this is that's a great way to do it uh because people even kids who don't necessarily have misophonia if you're if you're expanding it to talk about mental health in general that's a great thing uh it's it's actually interesting uh because like misophonia is such a new concept uh and i was reading that it was quoted although the term was first coined in the early 2000s but the first time i heard about it was through kenya ripa he was talking about it on the morning show that she had And I was like, oh, my God, like, I have that. And I've been talking to friends recently who say, yeah, I have this thing called misophonia. And they go, like, oh, what is that? And I start explaining. And they go, like, oh, my God, I have the same thing. So I asked them, do the noises bother you? Or do you get triggered? They're like, no, man, like, I get triggered. And it's crazy. I was recently working with these two performers in Leipzig here in Germany. And I started talking about it. And one of them... got like really like interested like oh my god since i was little i was about nine years old too you know like oh my god yeah it's it's more common than you think it's more common than you think because like you said it's so new a lot of people like you were like i was are dealing with it in silence still
Adeel [30:50]: And so, yeah, we need to reach out to these people. And it's interesting that you asked some people, like, are you just bothered by it? Or does it send you in a rage? Because that is a fair question. I mean, a lot of people, you know, I don't want to judge people, but there are people who, you know, well, people consider it. people who don't have it uh just think that we just have a pet peeve when it's very different exactly and uh and that's something that yeah it's it's interesting to watch the trajectory of awareness because uh yeah a lot of people don't know about it and the ones and a lot of people just call it a pet peeve so there's uh it's and then that's where that the shaming continues and whatnot and so it just keeps people from not wanting to talk about it uh you know even more And so we need to break that cycle. And things like what you did in class are very helpful because they kind of, you know, you opened up and we'll reach other people. Interesting. Okay. What was the class you were teaching in? What was your PhD about?
Marcelo [31:59]: Well, my PhD was in music composition. and so i had to take different classes related to music i did teach composition sometimes mostly like teaching assisting so we would divide the courses in small groups and one of my favorite courses was the history of the beatles you get to talk about the history and the music then i got to do hip-hop also so it was pretty interesting and then towards the end i
Adeel [32:30]: look for a job in the linguistics department because they better than the music department and i ended up teaching spanish oh okay and any of those departments did you um did you ever bring up you brought it up with the kids the students i should say did you bring it up with your with your bosses did you ever get any kind of accommodations where you were teaching uh no there were no accommodations for misophonia
Marcelo [32:58]: unfortunately.
Adeel [32:59]: And you know, they just didn't give it to you or you're you just could tell.
Marcelo [33:04]: I did mention it once and nothing. Nothing came out of it. Well, yeah, it's like it's not in the in the list. Yeah, it's a conditions here. So but I did talk I had to call you call them mentors in the program. So when you go there on your second year, you have to choose somebody that you want to work with. So One of my mentors, I explained to her what was happening and she actually is the one who encouraged me to look more into my relation of movement and composing and start perhaps choreographing these movements and orchestrating them with the sounds that would trigger me and turn something ugly into something. Yes.
Adeel [33:53]: Beautiful. Yeah. So that that's, yeah, actually very interesting to me because of a project that I think I mentioned that I'm working on, but I was going to ask when you, when you talked to earlier and you were talking about the movement stuff of, yeah, I was going to ask if you ever thought about choreographing it or making this maybe part of a, or writing for some kind of theatrical or dance piece, that would be kind of interesting maybe to kind of to do like a modern piece. a modern interpretive kind of dance piece somehow incorporating misophonia in some way. Right.
Marcelo [34:30]: I love theater and I love dance. So that's definitely on the sides. The girl that I told you that I'm working with here in Germany, Leipzig, who also has misophonia, that's kind of what we're working with. And actually the piece that we're working on, it has to do with aphasia, which is... I've heard that term. Aphasia is, well, you have these two areas on the brain, the Broca's areas and Vernick areas, and they control speech. Broca's controls speech generation and Vernick's controls speech processing. So I am not an expert on this, but people who have Broca's aphasia, they can think and they know what they want to say, but they cannot say it.
Adeel [35:17]: okay yes uh yes that's why it sounds familiar because uh right there's bruce willis got that you know so it is not too long ago no yes there's a right there's a there's a a child i know that we we if he if he has if he has it but uh okay that's why it sounds familiar oh interesting okay yeah please yeah so you're you're uh you and her are um thinking about using this or or use this as a theme in a piece
Marcelo [35:46]: right so it's two performers that i'm working with and one of them is the uh the broca aphasia patient and the other one is the vernic in vernic they're fluent the thing is they just don't make any sense and even in the thought process
Adeel [36:04]: Wow. So they say stuff. It's almost like speaking in tongues. And it's just kind of like not comprehensible.
Marcelo [36:12]: Sort of. I'm looking at something that I can read here in my room. I'm actually going to read something that I have written here. So I have a fragment that I wrote here. Imagine living in darkness for days and suddenly being flashed with an intense bright light. these people would say something like imagine like hello morning afternoon something like that i mean it's just like they can read it but like or they can say whatever but like the words itself don't make sense they don't have a connection right interesting okay i hadn't heard about that one
Adeel [36:51]: Cool. Okay. Well, going back to, yeah, super interesting. We can talk about that later. Yeah, but going back to Misophonia, so this woman is the one who kind of like suggested you explore more that movement aspect that you were talking about earlier in relation to Misophonia. Exactly. Yeah, yeah, yeah.
Marcelo [37:10]: Yes. And I was going to write a third piece about it, but right at that time I got really sick and I could not continue with the writing. So I hope I can resume soon. yeah uh interesting is it writing music or writing do you also write text as well that kind of goes on goes with the the pieces that you're working on or is it just the music side yes i do like to to write my own text um although i have just text from other sources but uh i don't know man it's like like this is misophonia and mental conditions in general are such a personal thing yeah but I think it's better when we're able to put out all the caca that we have in our brains out in the art form. So I'm more inclined for this project to write my own text.
Adeel [37:56]: Yeah, yeah, yeah, yeah. No, super interesting. Yeah, I'd love to see how that... how that develops um so i guess yeah coming up to the coming up to the present how is uh do you tell more people about misophonia like uh yeah i'm just curious kind of like what's uh what's life like for you uh right now in terms of your friends and and whatnot and people around you uh i've got three different types of reactions and that's just to put them into categories so um
Marcelo [38:30]: Like I told you, I'm very open about mental health and mental conditions. So I've talked about misophonia and some friends have been very receptive. Some of them have discovered that they have it. Then you get the group of people who think, okay, like you were saying, okay, it's just a pet peeve.
Adeel [38:49]: You can control it.
Marcelo [38:52]: And then the most interesting one happened recently when I was driving family members and They were making a bunch of noises and over-accelerating the S's at the end, like make them very sharp. And I'm driving. And I'm talking about like seven, eight hours driving. So I had nowhere to run away to.
Adeel [39:15]: Yeah. Their lives are in your hands too, so.
Marcelo [39:19]: Yeah, exactly. So at some point I asked if they could stop. And there's like a wrinkling paper or something like that in there. I asked if they could stop and said, sure. But first they needed to stop doing what they were doing. So the noise continued. And at that moment, that was the most intense reaction I have had to the triggers. I had to put in an emergency bay area and I had to get out of the car and I immediately lost my cool. I didn't get angry. It was just a very emotional thing.
Adeel [39:58]: Yeah.
Marcelo [39:58]: And they felt really bad, obviously, but like one thing that they keep saying is that they understood what I was going through. And that's, that's when I say, no, you don't. Um, it's like, if you say to somebody, well, I have stomach ulcers and they're very painful and somebody who doesn't have ulcers to tell you, Oh yeah, I understand what it's like. No, you don't. You can sympathize, but unless you're on that person's shoes, do you have no idea? And that was my most extreme reaction. I thought I was going to get in an accident there for a while. So when I found that spot to stop, I immediately went there. And yeah, in the moment they understood and everything was cool. But then after a while, I think they'd start taking it really personal, which is how my mother used to take it. Or maybe this is just chasing my own tail. But that's usually when you live with somebody or you interact with people, and you're constantly being triggered by the sounds, it's hard for them not to take it personal. Like you're bothered by them versus you being triggered by sounds.
Adeel [41:05]: Right. Because I think to an outsider, it just seems like they don't know what's going on in the brain of your brain. So it seems like being highly annoyed by just you. And so how do you explain that? Because our brains, when we're triggered, the last thing we want to do is... explain anything we just want to run away exactly when we're not being triggered the last thing we want to do is think about this opponent and so it's like what is a good time and how is it how do you explain it exactly there's there's normally a good time and uh um kind of put it around you now so the email said you were telling me and how you
Marcelo [41:45]: want to do all this artwork and this music and theater piece with stories of people and your own story as well. I think that's a great way of putting it out there.
Adeel [41:55]: Yeah, yeah.
Marcelo [41:56]: Because you're not lecturing people about it. You're just making artwork, something that people can actually enjoy and be informed at the same time. Yeah, and when it's done right.
Adeel [42:04]: Yeah, sorry.
Marcelo [42:05]: Yeah. No, no, no worries. And you having this podcast too, I mean, it's fantastic. As a matter of fact, right at the time that I found you, I was... thinking, do short clips of me talking about my daily life with misophonia. I don't have an intention of becoming a YouTuber or anything, but do short clips and kind of saying, OK, well, this is what misophonia is. This is how it affects me. These are some of my triggers. This is how I react. Do you know somebody who reacts annoyed to noises that you're making? Maybe they have misophonia. This is what you could do. And I found this gentleman, and I cannot remember his name now. He's a doctor in Cambridge. He's the one who said, okay, well, don't say that you're bothered by something. Say that you're triggered by it. Because there's a huge difference. Everybody can get bothered by something. Not everybody gets triggered by something. When I found out that misophonia was a neurological condition, talking to one of my friends, I would say, well, it's the wiring. it's not psychological so there's nothing i can do about it there's an actual wire and it's kind of funny because like in one way do you know okay there's nothing i can do about it but at the same time go like oh man that's that's freaking great because now i know what's going on and it's part of who i am so i think i'm starting to finally make peace with the condition And kind of like say, well, I've been using it for art and now I'm able to explain a little bit more. It's actually turning into a positive.
Adeel [43:43]: Yeah, no, that's great to use it as part of our work. And yeah, like you said, I mean, I think it's a fascinating topic to explore, not just for awareness, but there is so many other dimensions, like how it affects your family life, how it may be was impacted by childhood experiences how um there are comorbid conditions like you have yourself so there's there's kind of like a um yeah there's a misophonia but then there's there's also other layers and dimensions that i think make it universal so it's uh and i'll honestly just sometimes just wanting to run away from things that are bothering you i mean that's that's kind of a universal i think uh um reaction to this and so uh yeah i think many many different pieces of artwork i think uh will come out of this experience and uh yeah a lot of the stories i've heard on the show in fact some of the ones that you just mentioned are uh just sound like scenes from a movie or or you know a theater piece so that's kind of what has what it isn't kind of what is kind of inspiring me um yeah and i guess oh well yeah maybe my uh another question is have you um i know you've it sounds like you've sought out uh help for some some other conditions have you talked to any doctors or any professionals about misophonia and tried to get it looked at?
Marcelo [45:14]: Yes. So while I was at university, I was with psychological and psychiatric treatment. And I talked to both of them, both of the doctors, and they were very open, actually, to listen to my experience. And perhaps from Because it's their field, you know, they were genuinely curious about finding about something new. And my psychiatrist in particular, he encouraged me to do a little research about the brain and to try to understand what was going on. And at that point, I thought it was a psychological condition. But through this research, I got into aphasia. and how different parts of the brain work together. And now that I found out that it's a neurological condition, it's kind of leading me, okay, I want to do more. And there are institutions here in Germany who focus specifically on brain and music and how the two work together, not just in the creative process, but how certain conditions affect creativity. So I'm trying to get a foot on that door and see what happens and what I can take it. I don't know if I answered your question. I think I went on a tangent there.
Adeel [46:32]: No, well, yeah, no, I was curious if you talked to doctors, like psychiatrists. Right. Did you ever go back to that psychiatrist and say, yeah, this is what I learned, or what was it? Did he just want you to go learn about yourself and go away?
Marcelo [46:48]: No, towards the end of it, he was pretty nice. Towards my graduation, we had a very nice talk, but with both the psychiatrists and the psychologists. And I was very grateful for their help. And I could tell they were grateful too that I introduced them to something new and they perhaps can help some other people that have misophonia or they do not know that they have misophonia and they can point them in that direction. i need to contact them perhaps it would be a good idea to share the research that i found recently coming from the university of cambridge they have a um a research group dedicated to misophonia so i could probably share that with him but Yeah, I'm pretty grateful for their help, for sure.
Adeel [47:39]: Yeah, that's great. Yeah, there's a lot of research. It seems to be happening in the UK, at Newcastle and Oxford, and it sounds like Cambridge as well. So I don't know if there's a group in Amsterdam as well. So it seems to be a lot of stuff happening. in Europe, so I think you're in the right place. How's life with your family now? Are they still kind of acting the same way, your siblings and your parents? Or has there been any movement there?
Marcelo [48:08]: I don't really talk to them.
Adeel [48:10]: Okay, I was going to ask you, like, how is... Oh, okay. Do you talk to them at all about anything? I was going to ask about, like, how's your relationship with them in general, too? Uh... I...
Marcelo [48:22]: made an effort to distance myself from my family, to be honest. So I live now in Germany. I have a sister that lives in Arizona. My father lives in Chile, and my sister lives there. So I mean, yeah, I keep in touch, of course, but not on a regular basis. It's not like we're on the phone all the time. To be honest, I keep in touch mostly with my father and his new family. he went through hell and now he's 90 years old like this little kid that finally like he's reclaiming his childhood so it's it's a really good relationship we have but the man slurps like he's competing for a gold medal i have never heard somebody slurp bread dried pieces of bread and i have talked to him about it and he kind of sees his point he's like okay man yeah i see what's going on but i'm not gonna stop starving this is who i am man all right so this is that's yeah but there is this acceptance i accept him for who he is he has saved me with my condition and we have found a common ground and i i think that's kind of the thing too i mean uh People like us, people with misophonia, we want to run away and stuff like that. But at some point, we also have to compromise. And that's very hard when you have no control of your reactions. So it's either you're alone or 100% of the time. Or you know that, OK, I'm going to get triggered. I'm going to get exposed to some of these noises and kind of mentally prepared. And knowing that if it's getting to a point that it's not safe, that you can always walk away. And that's kind of like the understanding I have with my dad. So like whenever I have visited him in Chile and he's eating, I know that it's okay for me to get up and walk out of the room, that he's not going to get his feelings hurt. Like a moment ago, I was talking about how easy it is for people on the other side to take it personally. Finding somebody that can meet you halfway is fantastic. It's a huge relief.
Adeel [50:33]: right no that's yeah it's definitely a multi-product approach and yeah mentally preparing yourself i think is it ends up being basically the question a lot of what uh uh therapists will talk about is kind of like uh you're kind of changing kind of maybe your your thought process a little bit just kind of mentally prepare yourself for situations uh or or kind of changing your thinking about the sounds um Because, yeah, there's no cure for this. But then if you can find somebody who can kind of meet you halfway, that is super powerful.
Marcelo [51:11]: Kind of interesting, though. I have noticed, and I've read about it, too, that if somebody that you don't spend that much time with, so, for example, somebody that you know you're going to only see for half an hour or one hour, maybe twice a year, When they make the sounds, they don't trigger me for what I read most people. As bad as with people that you spend most time with. Family members, for example. So while it is a neurological condition, of course there are a lot of psychological elements that come into play. So it's It's not clear to mention that area.
Adeel [51:51]: No, I was going to say, yeah, it is definitely, at least my thinking, by completely professional thinking, not really professional thinking, but I definitely feel like it's a blend because you're right. I mean, for some people, there's a specific sound by one person that triggers them, but other people won't trigger them if they make the same sound. Or like you said, yeah, if... If you just see someone randomly, it might not trigger you. And maybe it's the brain assigning a low threat to somebody who's not going to, you're not going to see again. I don't know what that is. Or if it's like, you know, sometimes we think, well, if somebody who we're seeing often, who's around this often, is making the trigger sound, I think part of... the thought process your our brain goes to is uh well they should know better you know it's like they're doing it on purpose because that's kind of our crazy our crazy wiring uh what's what's the and so i feel like um that's probably a factor so i feel like there's a blend of uh psychological and more hard uh hard hard wiring And whether that hiring is something we're born with or something that maybe develops or gets activated when certain trauma or chaotic events happen early on, I feel like there is some connection there, at least anecdotally from the conversations. It seems like there's something there that needs to be explored. Yeah, complicated condition for sure.
Marcelo [53:29]: Absolutely. The fight or flight gets triggered. So now that you're mentioning all this, I'm thinking, well, yeah, like, for example, in the case of my mom, that the reactions came with a punishment, both psychologically and physical. Of course, my reaction to her was going to be greater because it's not only the neurological aspect, but there is a strong psychological trigger as well. Whereas with a more friendly person, it's like, okay, man, the level of The level of threat is not as hard as you say, so we can probably cope with this for an hour if we need to.
Adeel [54:05]: Yeah, yeah. That's true. Yeah, that social dynamic definitely plays a factor. Absolutely. Well, yeah, Marcelo, we're getting close to the hour here. You know, I'd love to keep talking, you know, later about more music stuff that might be not directly misophonia related, but is there anything kind of you want to, any kind of last things you want to share with people who are listening about your journey and things you've learned?
Marcelo [54:39]: Yes, absolutely. So whether you know you have misophonia or you know that you've been triggered by sounds and you don't know why, my biggest advice is don't be ashamed. And there's nothing wrong with you. It's just a condition that you just happen to have. And we all have it. And luckily, by people like you, Adeel, and other people, we're building a strong community where you can feel safe about it. So be open about it. Perhaps embracing it is not the best word because it is hard. But definitely don't be ashamed of it. And just know that there are people that you can talk about misophonia with. And they'll respond in a positive way. I was mentioning at the beginning, I had friends growing up that I could talk with. As I've grown up, I've found friends that also have this condition. It makes it so much easier to be able to express what's going on in your head.
Adeel [55:47]: Yeah, I agree that that shame, guilt piece, I think I didn't realize how common and strong it was before I did this podcast. And that's that's really that. Yeah, that's also the first lesson I try to. tell people is to try to just don't yeah don't feel ashamed we're we're all or try not to because we've i mean we but we've all felt that for so long that it's it's uh uh i feel like it's kind of my the first thing i want to help people with is getting over that shame or guilt like you know we can't cure misophonia but if we could take that step to try to help people not feel ashamed is is goes goes a long way absolutely it's a good reminder uh Well, yeah, Marcelo, thanks again for coming on the show. It's really nice to hear your story. Thank you so much, Leo. Thank you for having this wonderful podcast. Thank you again, Marcelo. Always love to talk to misophones who are in the creative arts, especially music. If you liked this episode, don't forget to leave a quick review or rating. Wherever you listen to this podcast, you can hit me up by email at hello at misophoniapodcast.com or go to the website, misophoniapodcast.com. It's even easier to send me a message on Instagram at misophoniapodcast. And you can follow there on Facebook, misophoniapodcast, Twitter, misophoniashow. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
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