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Adeel [0:00]: Reprounse your name, I assume it's Faye. Pretty straightforward there. Fakenesky, okay cool. Well, yeah, then I guess I'll say my usual, Faye, welcome to the podcast. Great to have you here.
18299161 [0:04]: Yeah, it's Blake Henevsky. Yeah, it's great to be here. I didn't know this was a thing, so that's very exciting. It's great to find more things in the Missifonia community.
Adeel [0:23]: Yeah, yeah, yeah. And you've been posting a lot and I didn't dig too much into kind of what, because I want to get into all that, but I don't know, maybe for starters, do you want to kind of tell us roughly where you're located and then we can kind of get into a little bit about what you do.
18299161 [0:38]: Sure, I'm based in Los Angeles, California. That answers the first question. Should I just go into what I do? Okay, yeah, I do a lot of things. I say I'm a multimedia artist. I'm an actor, comedian, I'm a content creator. I have a small business and I'm a filmmaker as well. So I do...
Adeel [0:46]: Yeah, yeah, yeah, I'd love to hear it. Yeah, exactly, go for it.
18299161 [1:08]: a lot of different things. Yeah.
Adeel [1:11]: Awesome, yeah, and we'll obviously, we'll tag you and post all your links when this goes live. So yeah, I guess you've been posting a little bit about Misophonia and I just recently became aware of your account. You wanna tell us a little bit about that, how your Misophonia advocacy started?
18299161 [1:17]: Awesome. Absolutely. So misophonia advocacy kind of is harder for me for some reason than all of the other advocacy I do. Advocacy, I think, comes more naturally. get like, quote unquote, praise for the advocacy I do. But I think it's like a necessary thing that I do and a lot of other people in the disabled community do. And I think it's a privilege not to do any sort of advocacy because it's a thing like I have to advocate every single day of my life. And from that, I end up advocating for communities that I am not a part of because some people do not have the voice to do it themselves. And I am privileged to have a platform to be able to speak up for other people who may not be able to and to be able to advocate for change in policy and awareness and acceptance for different disorders, for things going on in the world and for for things that people may not be aware of. Misophonia is something I've struggled with since I was pretty young. I am disabled. I have multiple different disabling disorders. And I recently made a post talking about, like, I really love to involve comedy in what I do. And I like to educate and inform people through comedy. So I kind of made it a joking post ranking different disorders I have on how evil they are. And that ties into my...
Adeel [2:53]: Yeah, I that.
18299161 [2:54]: my film and what I'm doing. I ranked Misophonia as definitely one of the higher ones, despite me having physical disorders that people I think would assume due to their preconceived notions of disability, that those disorders probably impact me more on a day-to-day basis. And they do impact me a lot, but Misophonia, I'd say, is actually disabling to me, which I think... Some people wouldn't think, I think some people with maybe more mild misophonia wouldn't think it is disabling, but I definitely do think I would consider my misophonia very severe, very disabling. And I am diagnosed with severe misophonia, and I do have physical disorders, but my misophonia is very evil, and I'm very excited to be able to work on a short film, which hopefully will bring more awareness and acceptance to the disorder through. comedy and media, which is something that people haven't seen before. it's always been hard for me to talk about it because when I think and I talk about misophonia, I hear the sounds and everything like that. And I think it's been an interesting topic for me because other disorders I have, they have more awareness and acceptance like level one support needs autism. Like I have what was formerly known as Asperger's. and is now just level one support needs autism. And that's very, pretty well known. It still has some stick stigma and everything like that. Of course, there's a lot of challenges and barriers that I face with that, but that's a lot more well known despite misophonia not actually being uncommon. And then other things they have like hip dysplasia, hip impingement and fibromyalgia is also not as well known. would say there's like I have the reason I have so many things. A lot of people are like, that's too many things, which don't worry. I agree. But the reason I have so many things is because all these things have comorbidities and kind of are all attached to one another. And misophonia for me definitely is part of my autism and it is oftentimes comorbid with autism and sensory difficulties, but it can be often comorbid with OCD or just on its own. And I've yapped a lot. So.
Adeel [5:16]: No, no, you hit on a lot of amazing things that, yeah, first, a lot of people have in common of be you're right. We don't talk about a lot of this stuff enough. For example, yeah, a lot of people have come on the podcast with stuff that you would think, my gosh, that should be the focus of your life. But they say, Misophonia is actually, if I could trade anything, it would probably be Misophonia first. And most people don't get it.
18299161 [5:40]: Yeah, absolutely. 100%. No, nobody like people don't have misophonia. They don't get it. And I recently just started dating someone who also has misophonia. I've never dated somebody who had the disorder and I think it's been very affirming to me. And also like, I would think it would be more difficult maybe because we both have it, but I don't think it is because they also understand. And I think with other people, Like the top thing I think I and other people with misophonia have heard probably is like just get over with it or like you'll have to like just get past it. And like we wish we could. We all wish we could. And like that's something I'm sure like if anybody goes to therapy, like we all have really, really tried. And I recently have been talking to my therapist about it. That it's like every time I go on, like I would the top thing I would love is I would love to get over my misophonia. And she's like, that's not really how it works. Like, unfortunately, with the treat, like the level of treatment we're at and there is no cure for it. You can't just magically snap your fingers and be over misophonia. And everybody I've talked to, they have gotten better and like have improved how they've been able to control their emotions with it. But nobody has completely gotten rid of their misophonia. People have been able to cope better with the symptoms. So my goal now is trying to accept that and cope better with my symptoms, which is an on and off thing for me because it's brutal. It's pretty brutal.
Adeel [7:12]: Yeah. Yeah, so there are some people who have come on and said that they have found relief through things like memory reconsolidation, is, if the misophonia, if you did the right kind of work in the misophonia arose from, for example, some memories in the past, there is talk about rip.
18299161 [7:43]: the power lines are different.
Adeel [7:48]: placing some of those memories in a way and that has kind of helped along with other work. Like you said, there's no single snap of the fingers kind of thing, but there have been people who have found some freedom from it. I'd love to hear about, guess, obviously many places we can go and we will, but I'd love to hear about this film. First of all,
18299161 [7:56]: Yeah.
Adeel [8:13]: You're right, comedy is actually a common thing that I think we all know suddenly diffuses the situation. Being around somebody who has misophonia, suddenly, well, often does reduce the fight or flight because you don't feel like you're in danger all the time, which is kind of what triggers in our brains. But yeah, let's get to that. Let's start with maybe the film. I'd love to hear about the idea there, the concept, where it's at. if you need any funding.
18299161 [8:43]: Absolutely. I have only made one other film before and I would have not thought it possible for me to be able to make one. And I made it through the Easter Seals Disability Film Challenge, which is a film challenge, which is really unique that focuses on, you have to have one person at the forefront of the challenge with a disability, like as the lead actor, director, something like that, one or more people. And I was the executive producer.
Adeel [8:47]: Mm-hmm. Mmm.
18299161 [9:11]: co-writer and lead actor in my short film, Do No Harm, that was last, in this past April, and I was nominated for best actor in that film. So that was really exciting. That was my first time making a short film, and I basically learned a lot of things during that process. And now I've been sort of building the team for this film. I wrote this film earlier than that last. film. That film for the Easter Seals Disability Film Challenge, everything is done in a week. The writing, all of the work and everything is done in five days actually, so less than a week. It's a lot of work and it's super, super intense. So for this one, it's going to be a lot longer of a process because different from the Disability Film Challenge, for the Disability Film Challenge, everything has to be volunteer mandatorily. But this time I really want to pay disabled people.
Adeel [9:42]: Hmm. Okay.
18299161 [10:05]: My goal is to have a team of mostly marginalized people, people who have been neglected in the film industry, and I want to pay us. So the big thing has been fundraising because a lot of people go into making any sort of film, even a short film, and a lot of time and effort goes into it. And for that, a lot of money goes into it. So I wrote this film with the co-writer of Do No Harm that I made previously, which is available on YouTube through the Easter Seals. a disability film challenge page. I wrote it with Liz Galales and it is about, it is gonna be a little bit less than 10 minutes and it is a comedy horror film about a student which we played by me that I'm not very good at pitching. I don't do this part. There's gonna be like a producer that's doing it. I'm doing a lot of the creative stuff and the writing, but.
Adeel [10:56]: It's fine, yeah, yeah, yeah.
18299161 [11:02]: A teacher starts passing out the tests and all of a sudden one student pulls out a piece of gum and the world shakes. It's like a very surreal, very campy vibe to it. The world shakes and you hear like, no. And I split into two people and there's one, like one Faye and another Faye. And then the other Faye goes in front of the boy who's giving a piece of gum to the other boy and starts basically trying to bargain with him.
Adeel [11:15]: Yeah.
18299161 [11:30]: at first, like, please don't do it. You know there's no grandma allowed in this class. Eventually as they start chewing gum, she starts trying to pry his mouth open, pull the gum up. But every time something happens, it reverts back to normal and she gets increasingly more angry. And these are sort of representing the intrusive thoughts that people with misophonia have that I personally struggle with. All while this is going on, the regular Faye is showing what people with misophonia, or at least I personally. show externally, which is crying, shaking, possibly like hurting myself. Like I'm trying to like internally battling what's like what's going on, at least that I had struggled with in school. And I'm trying to say like, don't like telling myself not to do this. And I'm like, because I am not an angry or violent person. And I'm thinking all these horrible things. And that's like one of the most horrible things to misophonia to me. But I really want to show what I think is the mix of genre in this disorder that is comedy horror, which is that it's, we are blowing it up to massive proportions over a piece of gum. I know how absolutely ridiculous this disorder is and how ridiculous it sounds to just explode the situation over a piece of gum. I want to show that we have this extreme fight or flight response.
Adeel [12:32]: Yeah.
18299161 [12:54]: over this. So eventually it escalates into the other fey basically killing everybody in the classroom, almost everybody into this like horror. And then it keeps flashing back and forth to reality, to the real fey where nothing has happened. Maybe people feel like a breeze and you're not sure what's going on. I want the audience to kind of feel this mix of reality and this confusion until at the very end there's this big explosion and the real Faye gets up and screams and then and the teacher goes, hey, no gum, because she sees the gum. Everything like deescalates because it was so blown out of proportion. And then the other Faye pops and then she goes, the teacher goes back to playing phone games on her phone out loud. She pops up behind her and that's the end of the film.
Adeel [13:33]: Yeah. Right. Yeah. Yeah. Oh yeah. Right. I love it. I love it. Yeah. No, the comedy horror. mean, I've often said that there's, there's a, there's a musical in the works somewhere in the future about misfinite because it's, it's like so much goes on in our heads that it's the whole other landscape. And so I love that you split, you split them into, I thought you were going to say like, could I, I sometimes describe it as a Jekyll and Hyde where there's like a Jekyll and then a calm. Yeah.
18299161 [14:00]: Yes. Yes, I've heard that a lot. That's exactly what I've also described it as. It's yeah, Jackal and Hyde sort of situation. There's going to be two of me and I'm working with my best friend who's a special effects makeup artist. And for some promotional pictures where it's like regular me and I want to be showing that like very scared, upset, frantic side. And all meanwhile this time I've done none of the tests. Like I haven't been able to do any of the work. It's like showing the test that I haven't been able to do.
Adeel [14:20]: Mm-hmm. Mm-hmm.
18299161 [14:38]: any of like classes over and all of this stuff is happening. So definitely it's going to be higher budget than I've worked on before due to all of the special effects primarily. We're going to need a stunt coordinator which I've never worked with before because there is going to be some stunts that I've written out including me kicking somebody out of a door in which I don't actually intend to kick somebody out of the door because
Adeel [14:38]: Yeah. Yeah. Mm-hmm. Yeah.
18299161 [15:07]: that is maybe illegal or violent. So this will have to be done with stunt people. And I would like to pay them and compensate them for their time because I believe that is fair and right. So everybody will be paid basically except for myself and some people.
Adeel [15:11]: Hmm Yeah I thought you were gonna the kid who was triggering.
18299161 [15:34]: Yeah, the yeah, I'm really excited to make this happen so far we have raised $40 which is a little bit far from our goal, but I'm very grateful to those people who have donated so far So Yeah, that's our go fund me is attached to our Instagram Which which is missifonia.film also
Adeel [15:42]: Hey! Yeah. Okay.
18299161 [16:00]: I did find out as we were making all of this, as we were doing the Instagram, basically as we had filled out the Instagram name that there is another Missifonia film. I, I can't.
Adeel [16:11]: There's a few, yeah, yeah. I mean, there's one called Misophonia, but there's, I mean, there's a short film from Iran, you know, that's doing film festivals. It's a 10 minute thing. Go look it up. I'll send you the link. Yeah, yeah, yeah. And so it's a it's a silent short film about a couple locked in a hotel.
18299161 [16:26]: I will. Yes, please!
Adeel [16:37]: locked in their apartment during lockdown and one of them has a phone yet. Yeah, know, anyways. But I actually had the director on the podcast, first person from Iran to be on the podcast. So, yeah.
18299161 [16:43]: Really, that's so... my gosh, I love that. That is so cool. And I think, did you have the other people who did the Missifonia feature film on the podcast as well?
Adeel [16:56]: No, not the one not the ones that did a there was a think two sisters who did one recently. Yeah, I I haven't had them. Yeah, I haven't had them on the podcast. But I'd love to see it. Yeah.
18299161 [17:01]: Yeah, that's what I got. I also want to say it seems it's very because as soon as I saw that I was like, they all what I'm what I'm very, I'm glad of and I'm very intrigued by is they're all very different. Like all these ideas are very different from one another. They seem to have a very like a different ours are both obviously like fantastical and not completely grounded in reality. Maybe the one from Iran is grounded in reality. I'm not sure. But is it or is it like
Adeel [17:21]: Mm-hmm. It's kind of a musical too. It's a silent musical with a bunch of weird effects. Yeah, so it's not super grounded in reality. Yeah.
18299161 [17:41]: Yes! Okay, that's interesting kind of how all of us see it in a sort of like non-reality way because of how our like brains work. But yeah, the musical, what I've seen from it, they definitely had a lot of effects and it is a musical and it has a lot of like visual effects and practical and special effects that they did. And it's a whole feature. So that's interesting to me.
Adeel [17:50]: Yeah.
18299161 [18:14]: but the ones that I've looked up, haven't had a female lead. So I'm excited for that. Huh?
Adeel [18:14]: Yeah. check, yeah, there's one from Quebec. There's one from Canada you might want to check out too. I'll give you a link. It's also another short film. But I think the lead has, I mean, it's not a school. There's no splitting. It's very different, the lead is female. Yeah, it's from a couple years ago or so. I forget if I had them on the podcast or not, but yeah, I'll send you that link. So yeah.
18299161 [18:26]: Please. Well, that's really exciting. I definitely, I don't think it's like a bad thing or anything that there's multiple of them because what I might know, no, no, you're not. The goal of this and what I want to do from this is to build more awareness acceptance and to build community. And I want more representation and that includes from anybody who has misophonia. And I'm assuming that all these people who are making the films are driven to do this because they have the disorder and they haven't seen representation.
Adeel [18:55]: yeah, no, no, I'm not saying that. saying, I don't... Yeah. Mm-hmm.
18299161 [19:15]: And I think all of us making these are like independent filmmakers because at least personally and everything I've looked up I have not seen a representation of misophonia in mainstream media. have seen Yeah, I've seen maybe Yeah, I like people who have been bothered by chewing noises and I've seen people have sensory problems, but not somebody who has the disorder misophonia, so I
Adeel [19:26]: Nah, barely, yeah. Not properly.
18299161 [19:43]: having somebody represented in media would be like a really, really huge thing about it. And I think getting people to have like more awareness and that's something that I really wanna do with the film campaign while I'm doing social media is that I wanna bring on other people with Misophonia to talk about their experiences so that people understand what it is and understand that it's not just
Adeel [19:52]: Yeah.
18299161 [20:12]: I'm a bit bothered by chewing sounds and how kind of drastic it is because I push. I found out that there's a whole convention for like research for misophonia.
Adeel [20:22]: Yeah, I just came back from it a couple of weeks ago. Yeah, there's a convention. There is the Miss Fund Your Research Fund does an annual event, which I also went to and participated in. So yeah, there's more attention. And then these short films, like anytime somebody hears about them, like it gets a lot of attention. So yours is not going to be any different. It's, you know, people are going to be really interested in hearing about it and want to see it do well. yeah.
18299161 [20:49]: Can you tell me a little bit about the convention?
Adeel [20:52]: Yeah, yeah. there's, okay. So there's the Misophonia Association Convention. That's usually the one that's called the convention. And it's, it's been going on for about 10, 12 years. Marsha Johnson is kind of the head of that. And she's kind of the one of the first audiologists in the nineties who recognized Misophonia. So, yeah, I mean, they get a couple hundred people from all over the country. This year was in Dallas. Last year was in Atlanta. It moves around.
18299161 [21:09]: Wow.
Adeel [21:20]: And yeah, it's, it's mainly, they get some speakers, like Dr. Jane Gregory and other experts, but it's mainly, and it's moving more towards just having, being community. So people just kind of like meeting, meeting other missive phones for the first time, sharing coping methods and just chatting, you know, and so it's, and they take care of like, snacks are all soft and not crunchy foods. They, you know, they, take care of doors, closing and open, you know, stuff like that.
18299161 [21:52]: Wait, that's so cool. Is there gum allowed?
Adeel [21:55]: I don't think there's, I didn't see a explicit sign, but I think everyone there knows to, know, yeah. So it's surreal to be around people you've never met who you've probably had shared experiences with your entire life. So that's kind of a surreal moment.
18299161 [22:01]: I think that's very cool. That is so cool. I have to check it out for like next, I think it passed this year, right? You said you just got
Adeel [22:19]: yeah, yeah, yeah. Yes, it just passed. I just came back from a couple of weeks ago in Dallas and next year, I heard maybe Wisconsin. I don't know. I don't know. There hasn't been one in LA. So, you know, I feel like that might be a, but yeah, it moves around. It's always where there is an embassy suites hotel because embassy suites, they're cheap. And then you get like, you get two rooms, you get like a living room and then you get another door to the bedroom. So there's always like a double quiet.
18299161 [22:39]: There's plenty of accuracy sweets here.
Adeel [22:49]: So they think it through.
18299161 [22:54]: That's so smart.
Adeel [22:56]: Yeah. And then the MRF Miss Fund Your Research Fund, that's more like researcher oriented, they had, it's about a week, but they had one day dedicated for anyone to come and hear from and talk to like the leading researchers in the field, hear about funding and whatnot. So that was in Chicago. So that's great too. think next year we'll be in Chicago again. think it's just always in Chicago. So September.
18299161 [23:23]: around what time is it.
Adeel [23:27]: September. Yeah. then in Miss Funny, so the convention is usually, yeah, like mid to late October. So, yeah. But so, yeah, you know, we talked about, you know, we're to have links to all your stuff, but I'd love to, you said, you know, Miss Funny started for you from like a young age. Do you like, do you remember what kind of was going on around that time?
18299161 [23:51]: Yeah, honestly, I think my dad helped with it because he definitely has it. think to a more mild degree or he has been able to cope with it and make it a lot easier. But when I was younger, my first generation, my parents are Jewish refugees from Ukraine. And I'm saying this for context, as I'm going to use a term. that he used, but when I was younger, I, as kids do, would make noises with my mouth and he would really yell at me. He would say, no chuff, chuff guying, like, or something like that. That's like the, I think that that, and he would get very like upset about it. And he would have me like cut my food up in small pieces with like a fork and a knife, like chicken fingers, grapes. He had me use like a fork, a fork and a knife for, and stuff like that.
Adeel [24:33]: Yeah. you Mm-hmm.
18299161 [24:47]: like I think prevent the sound. So I was very, and I really, I really take, I think this is because of the autism or I know it is, but like, take rules very seriously. and I was like, got it. And I don't know if I would have had it before or I like really like started then. but I, I like heard that. And then I was like, that's the rule, no chaff chaff guy. And then I think spread to. everything else and I was very mean to my brother because he was definitely chuff chuff cutting and he's younger than I was. He's two and a half years younger and I...
Adeel [25:23]: Mm-hmm. How old were you around that time, do you remember? Was it like really young, around three or four or? Yeah, yeah.
18299161 [25:31]: No, not three or four. I think I was probably like around, maybe around kindergarten. So maybe I was. Yeah, I was like five or six. Yeah, pretty little. And it didn't get more like serious until I had to really focus on things. It was there, but it didn't get, I think, to any sort of debilitating state until I had to do tests, until I'd had to do homework, things like that in school.
Adeel [25:36]: Yeah.
18299161 [26:00]: That was when it was very bad. think that's, at least with other people I've talked to at least, that's also when it's bad is when I'm also having to focus on something, watching a movie, even like that's not like a such a serious, like you're not gonna be quizzed on the movie after, but I would like to enjoy the movie and it's hindering my enjoyment of the movie. Movie theaters were terrible. I think like lockdown was...
Adeel [26:03]: Mm-hmm.
18299161 [26:26]: good for me in some ways. I mean, I liked this part of lockdown where I didn't have to go to movie theaters. And I was like, wow, I really like this where I can control my own environment because I really, can't with the noise and everything that people make. And I was very frustrated. I always had hearing problems, like some hearing problems because I have Eustachian tube dysfunction.
Adeel [26:42]: Yeah. Mm-hmm.
18299161 [26:53]: And I had some fluctuating hearing loss that I'm certain it's genetic from my dad's side of the family because my dad's mom is now quite deaf and my dad is hard of hearing as well. But I was losing hearing. And then in freshman year of college, I passed out, hit my head in a parking lot and I shattered bones in my inner ear. So I lost more of my hearing. And I was like, please, please be deaf. don't, so I don't have to have this anymore. Like go full send. And I was just, I was hard of hearing. Like I didn't, knew I had shattered bones in my inner ear or anything. I just noticed I like, I'd lost more of my hearing. And then I went and I had to go get hearing aids because it really was affecting my schooling at the time. And I hated it.
Adeel [27:28]: Yeah, wow, yeah.
18299161 [27:50]: I also have like heard this from some other people who had mis- I was very curious. I was like people who have misophonia who lost their hearing or who got hearing aids really, really, really struggle with it because I don't know if you have any hearing loss or have hearing aids.
Adeel [28:04]: No, mine's a little bit above average, so far.
18299161 [28:07]: Yeah, well that makes sense for Misophonia. It sucks.
Adeel [28:12]: But I don't know, the way we listen to music in our headphones sometimes, I'm like, there's gotta be a reckoning at some point or I'll lose my hearing.
18299161 [28:20]: Yeah, yeah, that makes sense too. But no, I couldn't handle hearing aids. I don't wear them anymore. There's like for people who wear hearing aids, there's like a period of adjustment usually, and then you get used to it. I did not last through the period of adjustment. I think it was maybe more difficult because it was right when COVID had started. It was like 2020.
Adeel [28:23]: Anyway. Right. Right.
18299161 [28:47]: It was 2020, maybe like January, February. So right as COVID started and we started putting on masks. And every time I would take my mask off, it would make this mask on, max off, huge, huge sound. And I would pull off my ear, expensive hearing aids would fly off into the distance if I took it off. And it's just, imagine every sound you hear plus Misophonia amplified so loud. Like I heard sounds I had never heard before that maybe some things would be nice like.
Adeel [29:02]: yeah. Mm-hmm.
18299161 [29:15]: The first time I put them on, I heard birds chirping and I was like, that's cool. And then I was like, OK, shut up. Like it was cool for maybe two minutes and then I was like, that's Yeah, that's enough. And then it was raining and then I was like, OK, now it's raining. And then I heard my hair against my ear, which I have hair. So like especially because that's where the hearing aid is and the thing.
Adeel [29:24]: Yeah, yeah, I got the message bird, yeah.
18299161 [29:41]: That's I don't know. Maybe if you wear headphones, maybe that makes a sense. I don't know. I can't tell now. I can't I can't hear it. But I heard my my hair against my ear. I didn't wear glasses at the time. But the mask against the ear, I just I went into a store that first day. I remember. And there was like different settings on it. Maybe they're more advanced now, but there were different settings on it. And I heard every single hanger. Scraping against the. rail and like I heard every single sound in the store, which usually with Misophonia, I hear a lot like I could pick out all sorts of different sounds, but I just heard everything. All the shoes, all the hangers, all the clothes shuffling, my hair on my ear. It was like maximum over stimulation. And then I went to go to the checkout and I had to, I, every single time I had to do something, I had to change the settings on the hearing aids to be like forward.
Adeel [30:13]: Okay, yeah.
18299161 [30:40]: side and it was just it was just a nightmare and I like so I would be always I'd just be taking them off all the time and I and then I went to school on the zoom and I could just turn on the captions why would I put them on I have no reason to use the I don't want to hear so what so I didn't do it um so I don't wear hearing aids I started I did an ASL class like American Sign Language and
Adeel [31:00]: Right. Yeah.
18299161 [31:10]: I did really like that and I like communicating that way. The only difficulty with like using sign in the deaf community is that not everybody else knows American Sign Language if I want to communicate that way. So that kind of is a bummer and that sucks. But I do wish I could communicate that way a lot of the time. And also I don't instantly know all of American Sign Language. Also a problem with people with dysponia and American Sign Language is that deaf people make a lot of sounds.
Adeel [31:20]: Right. Cheers.
18299161 [31:40]: which I don't know if you're familiar with a deaf person, but it's part of deaf culture. And it's even though they can't hear the sounds, it's part of deaf culture to make a lot of noises with your mouth and with your hands and kind of with your throat and stuff like that when they are signing. And a lot of times because they've never heard themselves, they chew with their mouth open and all this stuff. And I like to engage with the deaf community, but it's with misophonia can be a huge barrier.
Adeel [31:41]: Mmm, right. Interesting. Okay. Interesting. wow. No, interesting. Yeah. Thanks for, thanks for taking us on that. And yeah, I haven't had, I haven't, had been people on who have, you know, engaged that much with that, with that community or, or many of the communities that you've, that you're, that you're working with. This is fascinating. I mean, you're, I mean, now like your relations with your, your, your, guess, well, how did they react to your misophonia when you were growing up? Like, what was the feedback to your?
18299161 [32:11]: Yeah.
Adeel [32:39]: You know, actually I'm assuming maybe you were really, you know, agitated and, and screaming and I don't know. Like, was the dynamic like and what is it like now?
18299161 [32:51]: My family? I mean, I have ex-Soviet family. So they did not take what, like they were like, no, basically they were like, stop that. And they...
Adeel [32:52]: Yeah. Okay. Yeah, yeah, yeah. You're the second Soviet person who's come on and said the same thing. yeah. Yeah.
18299161 [33:08]: sense. I'm so I was not born there. My parents call me local produce because I was born here. I was here. They were all there. My whole family, everybody immigrated here in the 90s after the fall of the Soviet Union. It was yeah so I was born here in 2001 so that's that is that is when I was born. But yeah it was not received well I think with my dad. He understood and then it
Adeel [33:15]: Okay, okay. Yeah. Yeah, right. Right.
18299161 [33:38]: But when it probably got the worst was in high school. And I ended up getting accommodations for what I was diagnosed with at the time was anxiety and depression. So I ended up getting accommodations for anxiety and depression to be able to not for the depression, but like I for the anxiety, I was able to do testing in a different room and everything like that. So that helped.
Adeel [33:44]: Mm-hmm. Mmm.
18299161 [34:05]: a lot, but literally everything would set me off. Like in the room, there'd be a clock ticking. Even I think where I live now, there's like fake quiet, I think. And sometimes I work better in a completely loud environment because that's more like white noise to me. I don't understand because I live with my grandma now and older people, young people, very young people, babies, and animals make a lot of noises.
Adeel [34:10]: yeah. Yeah.
18299161 [34:35]: And I find that I'm the most accepting towards all of those categories because I know they cannot help it. And I can repeat that. But because I have been living with my grandma a little bit over a year, it kind of, I was worn off. like still go a little bit crazy. So I do try to leave a lot, but yeah, her eating her one thing that gets me that I'm really frustrated that gets me because it makes no sense is her shuffling her feet. She literally because of the pain in her body. and and everything she walks so slowly and she shuffles her feet so i'm like i'm such an evil person for being bothered by this is what i i think all the time because i'm like it's also i shouldn't be like why do i even hear this and like i just know it's just i'm bothered that she's lingering and she's kind of like a ipad baby that she she loves to be
Adeel [35:12]: you Hmm. She's always on it? okay.
18299161 [35:33]: Get ready. She's like five screens at once all the time. She's on speakerphone all day, every day with like all her relatives. She goes through the Rolodex all day of all of her relatives and she's like calling, which I love and appreciate that she has an active social life. I love and appreciate that she's talking to people. But then at the same time, she is playing Bubble Witch Saga on her iPad, the like TV computer.
Adeel [35:36]: boy. That's the worst. Yeah.
18299161 [36:02]: not watching on the TV, she's watching it in the office on her computer screen. She is watching a Christmas movie and or and or Ukrainian news. And or at the same time on the tablet, she is watching like Outlander and CIS. So there's like maybe three to four of these things going on at once. So I'm hearing. yeah.
Adeel [36:06]: Hmm. With the volume on for, yeah, with the volume on for all of them? Okay, yeah. Why not, yeah?
18299161 [36:31]: Yeah, volume on and I go in she calls me to ask like what what she's going to get for groceries and I literally am like, can you please turn at least one of these things off? I see nudity on the screen right now Babishka I cannot talk to you while there is fully an outlander.
Adeel [36:43]: Wow
18299161 [36:53]: penis on the screen right now, excuse me, or like genitalia on the screen. I'm talking to you about what you want from the grocery store. And there's also like, I'm looking at you. I'm looking at your home country being bombed. I'm looking at Derek from Grey's Anatomy on the screen over there, Bubble Witch Saga and genitalia. It's a lot going on right now and I'm hearing all of that too. And then you're on the phone with your in-law. I...
Adeel [36:56]: Yeah, yeah. Oh, not into penis, yeah. Yeah.
18299161 [37:20]: I don't know what to focus on. It's like more than just the Misophonia. I'm just like at a loss for words, honestly, when I go into the room sometimes.
Adeel [37:27]: She might have a little ADHD or something.
18299161 [37:30]: I don't know. I don't think anybody in our family is neurotypical or normal, but she's most normal one. My mom always says everybody, she may be the neurotypical one. And I'm like, I don't know. Now that I've lived with her and her complete rigidity and routine schedule, she makes me go to four grocery stores in a day. She would do it herself. She really misses her independence and driving and everything like that.
Adeel [37:54]: Wow.
18299161 [38:00]: And she, it's her couponing. She's really into her coupon. And it's like, she has to save the most money and she has to go to Super King, El Super John's, like all this, Armenian grocery store, the Russian grocery store, like all this things, the Mexican grocery store, like to get all these different items. Like she literally will go to one store to get four avocados. I kid you not, one store for two avocados. And I'm, so this all takes like so much energy from me. And I'm like, I need you to pick one.
Adeel [38:14]: Yeah. Wow. Yeah.
18299161 [38:29]: And this is difficult for her because I cannot go to four groceries a day. That's so much. Because I think the money you're saving on groceries is going to gas.
Adeel [38:33]: Yeah. Yeah, I was going to say, right. Right.
18299161 [38:43]: It's canceling out. And I really, really tried to convince. I wanted to go to Trader Joe's. I miss Trader Joe's, but Trader Joe's has no sales. So she thinks it's worthless. And I, can I please go to Trader Joe's and, and she says, but I bread. And I'm like, Trader Joe's has bread.
Adeel [38:56]: Yeah. They have great bread. Yeah, they have this new super bread that I love anyways.
18299161 [39:03]: I haven't seen a Trader Joe's in over a year. I miss nor Target. Cause there's why would I go? Why would I go when I mean, I'm just not going to Target for other reasons, but like why would I go when I have to go to all these other stores? She doesn't understand like why I would need to when they have no sale. I'm like, because I like the snacks they have and I like the vibe and the Trader Joe's.
Adeel [39:06]: wow, okay, okay. Yeah, yeah. Yeah, yeah, yeah, Right. Yeah. Interesting. Yeah. Surprise. Yeah. Surprise guest star with your grandma. That's an interesting, interesting story. But it kind of completes the picture of your family, which just is, yeah, lot going on in person and perhaps genetically or epigenetically. and yeah, I mean, you mentioned comorbidities. you want to, I mean, obviously that's, so, you know, everyone who's probably been to your
18299161 [39:50]: always.
Adeel [40:02]: your social media saw the list and so they kind of have an idea. And you mentioned some things feel related. Yeah, I'm always curious to ask you how they feel like these things relate to each other, perhaps in day to day, but also in the order maybe that you noticed them growing up on set and whatnot.
18299161 [40:23]: I think a lot of my disorders, I think, jump and relate to each other, specifically with misophonia. I think obviously it has relation to autism, has relation to anxiety, it has relation to... What I've had lot of relation with it to growing up is eating disorder and ARFID, which... ARFID, is a restrictive food intake disorder.
Adeel [40:46]: What's the last one there? Arp-arpid? Ararpid.
18299161 [40:53]: active restrictive food intake disorder, believe, it's comorbid with autism often. It's a very big oversimplification. It's just being very restrictive with food. It's kind of when you think of a lot of times with people who are autistic being very picky with food, like having a lot of rigidity, having texture sensitivities and stuff like that. I've not eaten
Adeel [40:59]: okay. Uh-huh.
18299161 [41:22]: for very long periods of time because I've been so like set off by food and food stuff like that. And a lot of that has connected to not just food textures, but food sounds. And it has connected me to like, it's made having an eating disorder like body image wise a lot easier because like once I got connected to that part, that when you, when I started having an eating disorder, like a generalized food, like eating disorder with restrictive eating and body image, it became so much easier.
Adeel [41:27]: Mm-hmm. Gotcha.
18299161 [41:52]: not to eat like once I start it's just so easy. So I like had not eaten for the longest period was nine days that I had not eaten. And I obviously made everything else worse where I was like passing out all the time. have a syncope disorder. So I was passing out. But I because of the misophonia, I hated the sound of my own chewing and eating and everything. And no food was there. Right. I just couldn't get the food. I just wouldn't eat it.
Adeel [41:59]: Yeah. Wow. Yeah.
18299161 [42:19]: And a lot of times like grocery shopping is really hard for me. I get really confused about food. Very, very overwhelmed. Nothing is the right texture. I can't figure out like what foods go together. I don't have the energy to cook it. And so I won't eat and then it just gets easier and easier not to eat. So it all connects with each other. And then also I have TMJ, which is, I don't know what it stands for. It's the jaw bad, jaw bad.
Adeel [42:46]: Okay, I think I've heard of it. Again, I don't know what it stands for, but yeah, people will Google it or chat GPT.
18299161 [42:49]: I get diagnosed with, I lock it in my brain and I'm like, I'm not gonna remember what that is anymore. But my jaw like pops and locks a lot and it makes a lot, it makes crunching sounds when I'm talking, when I'm eating, just opening my mouth. And it's very obnoxious.
Adeel [43:07]: It's temporomandibular joint disorder, I believe. I'm not gonna remember that in 30 seconds, but yeah, okay.
18299161 [43:12]: There you go. Yeah, exactly. That that exactly. That makes that makes sense. But it's like, like, it just like is like popping. I had because I have hypermobile spectrum disorder and hyper hypermobility disorder. So a lot of my joints are in place. But but TMJ is very common. And I probably ended up getting it from grinding my teeth from anxiety when I was sleeping. And then also with misophonia, I end up
Adeel [43:22]: Yeah. Yeah. Mm-hmm. you
18299161 [43:42]: like just grinding my teeth to bits and that pressure really sets off TMJ and that causes pain and also ear problems. So everything just like is so connected within the body that also doesn't help migraines and everything like that. With the syncope disorder I have, the fainting that set off, not set off, I ended up with lot of concussions from that and head injuries.
Adeel [43:50]: Yeah. Right.
18299161 [44:11]: and head injuries caused other disorders, which could also have probably worsened misophonia and made me a lot more irritable. Post-concussion syndrome and concussions can worsen irritability for sure. So that also probably worsened it. I think none of the disorders I have helped misophonia and have probably made it a lot harder for me to heal through therapy and stuff like that. And it's been very hard for me to give myself grace in doing it, but I think I've gotten better.
Adeel [44:29]: Mm-hmm.
18299161 [44:42]: coping mechanisms through time. Like the best coping mechanism I've been given that I really need to do is like when I am triggered by something I need to like, cause I've restricted my like stimming for so long is I just need to like shake and to stim, which I don't do. And I'll just like sit there and like vibrate and see which is not helpful or like cry or something like that. Because my body wants to like
Adeel [45:05]: Uh-huh. Right.
18299161 [45:12]: leave basically. I want to flee because I'm not going to fight. I don't fight. I don't fight people. I don't like to argue or anything like that. It's very bad. Like if I get into an argument, I don't like confrontation or anything like that. takes, it doesn't take me a lot to get, but I don't like to, you know, especially like the people I love. don't want to hurt their feelings or anything like that. So I just need to take the energy to get out of there, take a walk or something like that, or just
Adeel [45:25]: Mm-hmm.
18299161 [45:42]: wiggle it out because it's not helpful to just sit there and vibrate because then I'm still there.
Adeel [45:44]: Yeah. Yeah. No, that's, you have a lot going on and you, I mean, you deserve grace. You, you deserve to, yeah, give yourself a, a, you know, a break. and, uh, have you heard the term HSP, highly sensitive person? Um, people who, yeah, you know, so I just popped into my head, obviously, when you were saying like, you you don't like to, I mean, nobody likes to have a confrontation, but some of us feel that energy a little bit stronger than
18299161 [45:56]: Thank you. I think I have, yeah.
Adeel [46:19]: than others or, you know, they're able to read the room like, you know, times 10. And so we don't want to, we don't want to take, it's exhausting on top of everything that Misophonia and, know, the, all the 20 other things that you have going on probably exhaust you. So, yeah. So what I guess, a few, a few quick things. were almost at about an hour and I do have like a, another meeting in about 10 minutes, but I'll look at you like.
18299161 [46:19]: Yeah. Yeah, for real, yeah.
Adeel [46:46]: Do you remember misophonia being, you had a lot of stuff going on, was it one of the first things that you noticed of these conditions, like chronologically, or was there other things around that time? Okay, yeah.
18299161 [47:00]: Not that I noticed chronologically, but like if I was diagnosed, I was probably diagnosed with anything when I was little. I had very chronic ear infections. I had very chronic, horrible, horrible ear pain, ear sensitivity, anything like that, which may have been, I don't know, connected or exacerbated it. it was eustachian tube dysfunction, which it wasn't labeled until later.
Adeel [47:11]: Okay.
18299161 [47:25]: But I had, it can be common for kids to have a lot of ear infections, but I had a lot of ear infections. I had ear tubes. had like multiple, I don't know. I don't think I had multiple. I had my tonsils taken out and stuff like that. They were trying to figure out what was wrong with me. I like couldn't handle like pressure changes or anything like that, which is what eustachian tube dysfunction does. Do you know what the eustachian tube is?
Adeel [47:32]: Mm-hmm. not off the top of my head. assume it's...
18299161 [47:53]: It's like the tube in your ear that kind of does... I could be wrong, I'm not a scientist, but like it's the tube that does pressure, like balances the pressure basically, it affects your balance and also it's like when you go down on a plane, it's like maybe you're popping your teeth, stuff like that. Mine is floppy and like loops, it's like not working properly. So I get ear infections a lot and I have a lot of pain.
Adeel [48:00]: Yeah. Yeah. Yeah. Uh-huh.
18299161 [48:21]: with pressure changes and things like that.
Adeel [48:23]: Gotcha. Gotcha. Okay. Interesting. And, and again, in terms of like, you said you've seen a therapist, like what else have you tried anything for misophonia in terms of like professional, don't know, like different types of therapy, different types of medication. I'm kind of curious what you've, and you may have had some of these things for other conditions. I'm curious how that may have, those things may have affected this.
18299161 [48:47]: Yeah, I have just so much going on. It's kind of hard to tell what's affecting what or what's coming from where at a certain point. Like I talked about this with one of my friends who has a lot of like disorders and is going through chemotherapy now recently. And I'm just like, on earth do you tell, I'm like just at a hysterectomy. Like how do you tell what's like, what is coming from where? Like I can't, it's so hard for me to tell when I am sick because I'm always sick. Like I always have to.
Adeel [48:52]: Yeah. Mmm. Mm.
18299161 [49:13]: of like a light cold, like I have so much pain going on regularly. It's so and I and then I get flare ups. So it's so hard to tell when I mean it flare up versus when I am like ill or I have something severe going on. It's very difficult for me to tell these things as far as therapy.
Adeel [49:31]: Mm-hmm.
18299161 [49:35]: I've gone through multiple different therapists. Misophonia was definitely one of the earlier things I was just diagnosed with like after I think depression and anxiety and then it was misophonia and then PTSD. And PTSD, I don't believe was misophonia related because that was from trauma like after in high school. But a lot of the therapy ended up being focused more on the PTSD and stuff like that. And I had to try to like deal with PTSD.
Adeel [49:54]: okay. Mm-hmm.
18299161 [50:04]: related stuff and I had, I Kaiser, so there, I don't know if you had anybody here.
Adeel [50:05]: Mm-hmm. I used to live in California. miss Kaiser. least I had a good experience. I had a good experience, but not everybody does.
18299161 [50:18]: good. I'm so happy. Yeah, no, I personally have not had a good experience with Kaiser. I know a lot of people
Adeel [50:25]: Well, so they're great for if you don't have if you don't if you're not like if you don't have 20 things, if you're just a normal person, I don't mean to say normal, you know, mainstream person. Yeah.
18299161 [50:30]: Yes, that's true. If you don't have a choice, I know. That's true. Yeah. If you're a mainstream person, if you have like a couple things, they are good. And that's what I've heard they're good for. But if you are complex in any way or have multiple things, it's pretty tricky. And I don't think it has gotten better. I think it's gotten a lot worse. I've dealt with a lot of pretty horrible things with Kaiser. I think their therapy and everything like that, excuse me, psychiatry has been the worst that I've been dealing with when I first started having problems. mean, you can only have at least what I have now, you can only have an appointment once a month with them for less than an hour, which is personally less than I need or sometimes I need more than that. No outside therapies are covered by their insurance.
Adeel [51:21]: Yeah. Yeah.
18299161 [51:27]: As far as psychiatry goes, a lot of their psychiatrists are really, really behind on what's in the DSM-5. Currently, at least in my experience, that's a whole another story. But the first therapist that I had was through Kaiser. Her name was Marcia and she was a grief and substance abuse counselor. I did not have grief or substance abuse problems, but they were out of like, and I was really, I was like, 13, 14, and they were out of teen or young adult counselors for anything like that. And her advice to me was, have I tried doing my homework? And that's a quote from her. Like, have I tried doing my homework? And I was like, I'll try that, thank you. I did get really good grades and I did do my homework. I just really struggled with it. But yeah.
Adeel [52:16]: Wow. Yeah. Well, that's just because we're smarter than anyone, than everyone else missifones are. but we're, pretty smart. I would say overall, or people who come on.
18299161 [52:25]: Are we? Is that a personal comment or is that like a research based?
Adeel [52:34]: It's not research. It's not research based, but there's a lot of engineers. mean, I might be a little bit biased, it is a fact. I Marsha Johnson, since the nineties has been saying like, at least a third of her Missathonia clients are like engineers. so there's something about it. yeah, I digress.
18299161 [52:53]: That's really interesting. That sounds good. But yeah, she did not know what to do with me. I did not have any substance problems. I'm very, I think unnecessarily worried about substance problems. I recently got prescribed some like muscle relaxants for like my pain. And I have taken them like only a couple times in the time I've been prescribed because people can get addicted to them, which.
Adeel [53:02]: Yeah. Yeah.
18299161 [53:27]: Because I'm so scared, think it's impossible for me be a take, because I like barely ever take them.
Adeel [53:31]: Yeah. I get worried taking two Advils. It's like, this gonna... Yeah. Right? Yeah.
18299161 [53:36]: Yeah, I will take an olive. I think I'm OK. But yeah, that lady did not know what to do with me. And I think I just I've just had CBT types of therapy mostly and I've been most successful with and. Yeah, but I'm definitely open to trying new types of treatments if there are treatments out there that I can find.
Adeel [53:50]: Okay. Well, yeah, listen to, yeah, listen to other episodes of podcast and you might, yeah, you might, it might kind of open your eyes and we should talk, we should talk to, I'm kind of, I need to probably wrap this up now, but I'd love to, mean, especially after you, as, after you do your film and anything that comes up, I'd love to have you back on and we can keep the conversation going. Cause, yeah, I think, you've got some valuable things to contribute to the community. And I think we'd all love to hear more.
18299161 [54:07]: I will! I'll let you talk to you. Absolutely.
Adeel [54:28]: But this has been great, Faye. Yeah, thanks for coming on and sharing everything. It's great to have you part of the community.
18299161 [54:34]: Thank you for having me. This has been a really interesting conversation. I definitely learned a lot.
Adeel [54:39]: Awesome. And cut, and that's kind of how I know to, in editing, to cut.