ミソフォニアのドキュメンタリー “Quiet Please…” の音声データ(mp3)を抽出して，文字起こしアプリ「Otter」でテキスト化したスクリプト． 話者の名前や映像内のテキストは省略する． ========== 0:00:00-0:30:00 ========== Unknown Speaker 0:11 feels as if there are hot coils being tightly wound around my body from my neck down to my toes Unknown Speaker 0:25 there's the rage and then there's just this helpless feeling where you don't want to have the reaction you do and you just you need to get out Unknown Speaker 0:38 do you get what this does to me? It's Unknown Speaker 0:43 It's infuriating Unknown Speaker 0:52 it builds up so much, that there's nothing you can do you have to release it, or you feel like you're going to explode Unknown Speaker 1:04 I don't feel like I even have time to run. Unknown Speaker 1:07 It's pretty intense, and scary. Unknown Speaker 1:17 Literally, every waking moment you have to be on guard Unknown Speaker 1:26 just an overall like body radiating pain Unknown Speaker 1:36 this is like torture. Unknown Speaker 1:40 I have a condition that is hardwired into the brain Unknown Speaker 1:45 where I hear certain sounds, and my fight or flight response is invoked. Unknown Speaker 1:58 Number one trigger is gum cracking knives and forks on a play. Pen clicking flip flops, Unknown Speaker 2:06 sniffing sneezing coughing, tapping, buzzing, clicking teeth brushing, if someone brushes their teeth, and there's that sound, I don't know, I have too many triggers, I think by chewing is definitely the biggest one clicking on a mouse typing on a keyboard swallowing, lip smacking. Like I can't even Unknown Speaker 2:28 I can't even Unknown Speaker 2:30 I'd have to leave. Unknown Speaker 2:38 It's a matter of an uncontrolled fight or flight response, complete and utter rage that you cannot control and it does not go away until the sound stops fight or flight reactions is when you something happens to you as a person and you get very anxious and you feel your heart beating fast and your stomach churning. That's the exact sort of response that most people with misophonia have when they hear these irritating sounds, what happens is a threat in the outside world is transmitted through the senses, the eyes, the ears, so forth, those. Unknown Speaker 3:18 And that information makes its way to the amygdala, where it activates where the threat is detected by the amygdala. And that activates the freeze flight fight systems. The brain is now focused on the threat and continues to stay focused on the threat as long as that threat is there. We don't talk about freeze as much as we talk about fight flight. fight flight feels a lot bigger to us, because we feel that as an adrenaline pump. And in fact, our adrenaline is increasing. And we feel that as rage or we feel that as fear or we feel that as the need to flee, literally get out of the room get away from this offending stimuli. Right. If like all these things happen, your palms start sweating, your heart starts racing, your pupils get dilated, you get tunnel vision of the gastrointestinal system. And those things are essentially involuntary. I think that there is a neurological basis for misophonia. And there's some evidence of that I think there's maybe even a genetic or epigenetic component to misophonia as well. But there's already evidence that misophonia might have a neurological basis. There's no intention though and follow them to the conscious mind. These are all automatic reactions that are completely done without any participation in the conscious mind when I'm triggered by my misophonia. Unknown Speaker 4:36 The first thing that comes to mind is distress, anger and just annoyance and guilt. I just have like a range go through me and I just feel like I have to explode at that moment. It makes me feel anxious. Disgusted. I feel disgusted. I feel panic if I can't get away. I really do feel panicky. There is no one word to describe Unknown Speaker 5:00 It's just this this constant change of motion, you go from one to one that's worse to one that's even worse. So then you relapse to the first and, and you just keep cycling through this and you have to on the outside, just be stoic and pleasant. And, you know, not upset the other person, but it's it's torment. We're nice people, we're normal people. And then oh my goodness, we hear the sound and we feel like Dr. Jekyll and Mr. Hyde. I mean, my daughter, when she was younger described it, like she became the Incredible Hulk, you get this very Unknown Speaker 5:34 vivid violence fantasies of punching someone in the face, which you never would never do. But just, you get really mad and it becomes very difficult because you don't want to lash out physically. But that is really the one desire that you have inside because it feels like that's the only way that you can get relief from the noises. I've tried many different mind games with myself to try to overcome this anxiety and this feeling inside of that tightness and that hot rage. But I so far, I cannot that point your brains in fight or flight and Unknown Speaker 6:15 and you are getting the message of either hunker down, play dead, right freeze up, or I've got to get out of here. It's not something that you can put up with, you have a reaction that just is immediate, it's emotional. For me, I want to escape when you're having a reaction, you're, you're not thinking about what's going on physiologically, you're just feeling it. It's a very powerful experience. And it's not a pleasant one. It's an exhaustive one, like you've just been in a fight, I tell myself, I love this person. So much, I'm going to sit here, and I'm not going to say anything, I'm not going to remove myself from this environment, I will listen. And I will get over it because I care about them so much. And it doesn't work, it makes it worse, elicits a certain kind of reaction that is not just an annoyance, there's an actual physiological reaction from listening to sounds, the big differentiator between when somebody's annoyed by something, and when somebody has misophonia is when it impacts your ability to lead life. Normally, I can do my best to hide it and look like things are okay. But in reality, I can't really move forward until the noise goes away, I can't function to the best of my ability, it controls my entire life. When I hear that sound, everything in my life goes away and zeroes in on that sound. And that's what I'm focusing on while these people Yeah, chopping your gun might bother you, but you can sit on the bus next to somebody who's doing it, I physically have to get up or I'm gonna like vomit, to have that heart racing, you know, to have your whole body clench each time you're triggered is far more different than feeling irritated by someone crunching on chips. And it's definitely deeper than just an irritation or frustration. We didn't come to hate the sounds because we have an opinion about the sounds, we may have formed opinions about the sound based on our hatred of the sounds, you know, in an attempt to justify why we're so angry when the sounds get made. But the sheer panic that faces and misophonia when a trigger is set off is incomparable to the kind of mellow dislike that people tend to exaggerate into saying is hate. It's not a fine line. It's a big leap Unknown Speaker 8:47 to differentiate between something that's annoying, bothersome, you know that after it's done, it's done and you totally forget about it. With misophonia it's exhausting because you have the trigger and you're trying to deal with the fight or flight inside of you. And that feeling that you know you just either want to escape or you want to you know you want that sound or that visual to stop. You ever been on a plane with a crying baby do you know that feeling that you get where Unknown Speaker 9:19 you want to open the door and just jump out of the plane to get away from it. That's what I feel like all the time. You're trying constantly to keep your reactions with regard to misophonia under wraps that you don't have any more strength or mental capacity to really deal with anything else so like it's almost like everything else runs arrive the anxiety the you know, the stress the depression, and as you get older, your list of triggers gets longer, the severity in which they happen increases, which escalates the amount of energy that you have to expend to defend yourself against environmental noise effects. Unknown Speaker 10:00 Every interaction it affects every moment. Unknown Speaker 10:04 And I'm just tired of it. I feel like it took so much of my childhood Unknown Speaker 10:11 and I'm determined to overcome it. But I see Unknown Speaker 10:16 it's still take so much of my life now what I should be enjoying with my husband, what I should be enjoying with my kids. It's just always tainted. Unknown Speaker 10:38 Okay, Julie, let's go from the top. Unknown Speaker 10:41 A reaction to specific sounds misinterpreted in our brains. It is out of our control, now visible and therefore had to be explained. Our negative emotional response to sounds that make us feel rage. Like a hungry lion, and trapped within its cage. There are many emotional and physical changes in the face of anxiety and fear. A racing heart fight or flight response. From sounds nobody else could hear sounds and actions so repetitive, often from loved ones whom are close. We pick up their usual habits and sounds that are ignored by most How can a sound her you? Unknown Speaker 11:28 Ignore it? I hear you say she was only eating crisps. Why do you behave this way? You're nothing more than a bully. We cannot even breathe, cough, chew or bite our nails and God help us if we sneeze. Unknown Speaker 11:45 My only explanation to help you to understand how would you react? If I was to burn your hand? Unknown Speaker 11:53 Instantly, you'd be in shock, defense, strikeout scream, why? All I ask is for you to understand, to hear me, for you, at least to try. Unknown Speaker 12:06 The sound so often consume me. And I know I should not respond. I try my best to ignore them. Be still and bite my tongue. Unknown Speaker 12:17 I wish I could control this. And I'm certain you will agree. Would you not react when being burned suddenly? Imagine that intense burn several times each day. I'm sure you'd run for your life. Yet we have no choice but to live and be this way. Solitary confinement. Feeling alone. No cure our answers for the torture, begging God at times to please take me home. If I had a choice, I would change what's in my head. Living daily with this abuse. Why I'm surprised my heart's not given up and killed me. Instead. Unknown Speaker 13:03 Ray male is a very smart and humorous young man, even as a little boy, opinionated, always have been responsible like it trust him. He made it through college and as a man did very well in corporate America, and kind of got burnout on that. So at this point in his life is when he chose to go back to school and get his teacher's certification and work with children. It gradually got worse over the years. But if I had to pinpoint it thinking back, I would say around age nine or 10 interactions with my family. When we were watching television, I would become extremely agitated to the point where I'm screaming and yelling at them to shut up. Unknown Speaker 13:49 That's the earliest that I can remember. But even then I didn't associated with sensitivity to noise. I spent a lot of my life all growing up having no idea what was going on. I was the only kid I knew who had this problem. I was called crazy in school. And so I thought I must have been crazy. So I spent a lot of time confused and sad on why this was happening to me. I had no support from my family. They just made me feel worse about it. They punished me they they laughed at me. It was just really rough. And I think that lack of support or compassion and and feeling so separate from everyone made it that much worse when there was a trigger. Slowly and slowly I had more triggers. And it wasn't until I could barely eat with my family that I realized I truly had a problem. I remember around the time I was a preteen sort of the going through puberty time of my life, where I would sit at the dinner table with my family and the sound of their chewing would just drive me up a wall I wouldn't be giving them evil looks during dinner. I would eat really quick and want to leave I would feel enraged and disgusted towards them. But I wouldn't and I could not understand why when Unknown Speaker 15:00 I was younger, I didn't know that other people had always had to explain that really bothers me. And they were thinking I was making it up, you know, he's a child growing up having difficulties, maybe it's a symptom of something else. Unknown Speaker 15:12 Which it was not. It was just that growing up with misophonia, before the word was invented, Unknown Speaker 15:23 meant that there wasn't a conventional way of handling my condition or even acknowledging it. So there was really no sympathy in the household or beyond, it looks like they didn't know what they were trying to cure, because they didn't know what the name was, but they were just throwing different potential treatments at me hoping something would wind up curing it. Unknown Speaker 15:46 And while I understand being worried about, you know, your kid being weird, or abnormal in some way, it was, Unknown Speaker 15:57 it wasn't a good feeling growing up. Like there's something that you always Unknown Speaker 16:02 it's always wrong with you, you're broken. Unknown Speaker 16:05 I've actually been told by people, especially when I was younger, when I would complain about it, you know, I hope you enjoy your life alone, because you're not going to be able to stand to be around people and like, people almost bludgeoning me with it, you know, and it's a real sucky thing when somebody that supposedly loves you tells you that, you know, you're basically an idiot that can't get along with people. And I hope, because my problem is irritated that person, they bounce it back, as I hope you enjoy your shitty life, you know, which is fairly insensitive. Joyce Cohen had published a huge piece on misophonia, I finally had a word that I could use to immediately give somebody a reference point, you can talk to somebody about how sounds make you uneasy, you can tell them, I have this thing, or, you know, this quirk about me or like, I just can't handle this kind of thing. But it doesn't really make sense to them, until you give them Unknown Speaker 17:10 like a name they can grasp on to and when I could say misophonia to somebody, and they could type it into their phone and look it up. And the New York Times tells you, yes, this is what people have. Unknown Speaker 17:27 It's like a miracle. I was now able to express myself much more easily than just to say, I have this sound thing. I want you to understand it. But I don't know how to explain it. I just feel rage. I feel this. But it's kind of weird, because it's not just an annoyance. So having that word and having that actual description made it much easier for me to communicate with people. There was an episode on 2020 Unknown Speaker 17:56 that focused on a young girl whom I now I'm friends with her mom. She was a carbon copy of my daughter. I hear her screaming calm. Unknown Speaker 18:07 And that was the moment when she realized that, yeah, I probably have misophonia because this girl was exactly like me. The first time I found out that this is really a condition that other people have to was of course, our the internet and the feeling I had when I saw that other people in there quite a few other people. I was so relieved. I remember I printed something out. Unknown Speaker 18:33 Took the paper, as talk to I think was to my mom, Look, Mom, you always thought I was crazy. Now it's official. I get goosebumps thinking about this moment, it was such a weird moment because I realized, I'm not crazy. Or I am crazy, but just not in that kind of way. It had a huge impact on me. Because immediately I knew that all these feelings I'd been struggling with trying so hard to understand and trying so hard to hide. Suddenly, I knew that it was something this thing that I've been living with for so long actually had a name. And clearly if it had a name, that means that others also have it. And if others have it, that means I'm not alone. I just researched symptoms. And I was looking up Tourette's and OCD. And then I saw misophonia and it just fit me like a glove. You know, like, that's me. You know, I know when my wife first found out that it had a name. She was so excited. That was all she could talk about has a name. It has a name and she came running into the room to tell me that it had a name and to see the joy in her face that other people that she's not alone, I think was a nice, a nice thing for her to have. It relates to something deep inside them that says yeah, that describes my suffering. And if somebody Unknown Speaker 20:00 could label it, then somebody knows what I'm experiencing. And that's a very good beginning for addressing this concern and validating people's experience. I'm Dr. Andy, and your Bridgette, yes. How did you come upon deciding that she had misophonia for the last year or so, Bridget would come to us and say that she's having trouble with certain noises. But then it was just within the last few weeks, she started having more, I guess, pronounced reactions to certain noises and sounds. And she was having physical reactions to them. Also, I feel really, really angry. I'm not I'm the only one that doesn't like how my parents chew and swallow, who's really confusing. How would you say it affected you in your day to day life? Even before you were you realize what misophonia was, I couldn't hang out with my friends as often because I feel it's the people that I'm closest to bother me the most. So I went, I was in my room a lot, not around my family. But one point I thought I had anger issues, because the small things would just set off my anger, she did upon occasion tell us that there's problems going on. We did not accept them for a while. Okay, so I have a feeling that maybe time went on. And she felt that she was not going to talk to us anymore about it. So I take responsibility for not listening to her in the very beginning. And every time I think about it now, it's very emotional for me. Sure. That's the She did tell me she was very clear that she had something going on yet, because I didn't know about the condition. I dismissed her. Obviously, mom and dad have made a lot of environmental changes, which is great mom and dad, I mean, really, you taking this very seriously and said, Okay, we can change the house and make things better? How about friends? Have they been pretty accepted? When you've definitely definitely did you see her removing yourself too? Yes, softball is you know, something that was very prevalent in our lives, I helped coach her team and from a young age all the way on up, she was removing herself from you know, day to day playing. And we'll come in off the field and say I you have to take me out Mom, I can't do this. Certain situations with our teammates on the bench, that noises will be made. And, you know, it's something that she loved and just was so endearing to her. Now she couldn't participate in because of these noises and these reactions, when the time came, that Bridget felt comfortable enough to start talking to people about it. And we knew we had to tell our social circle and our family about this condition because you can't do it on your own. You need the help of everyone around you and everyone that's going to be involved in her life. So what about you as parents? Do you get some negative reaction sometimes now, how you raised her. The problem itself seems like once she got the your generators, the fact that she had a piece of medical equipment, as small as they are, that added legitimacy to this disorder, people began to accept it more, like you said it legitimizes what's going on, because we want to do everything possible to help our children. Unknown Speaker 23:16 The treatment options that we work with are things that are going to help disguise the sound. So for example, we might want someone who's having issues in the house to use open fit headphones with an app. So by allowing them to hear the alternate sounds, they're able to construct scenes so that they don't have to hear the disruptive sound as disruptive will give you some tools will give you some suggestions. But it has to be that you and your family think it's important. And I have to stress and your family because if the family isn't on the same page, we're going nowhere. It's important that we develop coping mechanisms to understand both ourselves and our partners that are affected by misophonia. And sometimes, this can be really challenging that the coping mechanisms may in fact just be coming more gentle with ourselves more permissive that we have needs and that we may need the environment to adapt to what we need. Or we may need to excuse ourselves from certain environments in order to pull away and calm ourselves down and, and reground ourselves to move forward with the rest of our day. Going to the beach, listening to the ocean, listening to sounds that are really soothing really, really helps when I just had a full day of triggers. I'm a fitness lover. I really love being healthy. There is objective, verifiable scientific evidence that exercise is the number one and I depressant, it really helps with mood. It really helps with tolerance just not for me. So following up Unknown Speaker 25:00 For all kinds of things, there are many days where it's so hard. And I say, you know, would it be better? If I just was deaf, if I could never hear again, what keeps me going is the fact that it's not all noises that I hate. It's just the trigger noises. I love music. And I find so much joy in music, listening to it, playing it, writing it, I play the guitar, I play the flute. And those are noises that not only don't trigger me, but they bring me joy, and they bring me some sense of peace as well. I feel that misophonia revolves around the negativity of sounds and how those who have misophonia perceive sounds, and to constantly feel that negativity towards noise can be not only draining and exhausting, but just ultimately, saddening. And to balance out that negativity, I like to find sounds that I think are positive and that make me feel happy. And for me, music is my largest outlet. Unknown Speaker 26:04 Whether it's listening to music, or creating music, I find that the more I do listen to music, and introduce happy sounds and positive sounds into my brain, the better I feel. Unknown Speaker 26:22 Art is about expressing what is within without it, there is nothing I lay muscle bear digging deep within to make the invisible visible. misophonia is a part of me, therefore it permeates within my work to release tension and preserve sanity are is my therapy, it is my life. Unknown Speaker 26:43 Expressing misophonia through my work is for me and for other people who suffer from misophonia. I want to connect with them and let them know they're not alone. And also want to spread awareness and educate people who don't know what misophonia is. And I think through my work I can, I can do that writing, painting, music, food, whatever it is that expresses something about your unique experience. And I believe it's possible that misophonia might be something that gives somebody a very unique experience in the world that then can be channeled into their art. I think in today's world, art can be a lot more than happy little trees. There's this sort of sense now from the greater public, that a social message can motivate and convey I know where I teach. In our department, we sort of encouraged the students to have something more than just aesthetics, and something that looks quote unquote, pretty or timely. I think if the public allows themselves to be moved and to be provoked, to be conscious, that arts done its job, it's educated you in the right way, I don't know where my art wouldn't be. Without misophonia even though it's such a pain in my life, I would probably be on a completely different path. Who knows what it would be Unknown Speaker 28:15 the stress and the anxiety that comes with misophonia and trying to accomplish something in your life, it really affects you. And it got to the point where I was feeling like physically ill Unknown Speaker 28:34 I remember having deadlines in class, and Andrew was like wondering why am I not making enough work in LA, I just couldn't, you know, I was just Unknown Speaker 28:48 just I don't know, depressed really. And I just really couldn't get myself, you know, to do that. And Unknown Speaker 28:56 so it was hard. Unknown Speaker 29:02 For about a month before it ended, I just really couldn't continue. So I decided to just leave Unknown Speaker 29:11 Jessica's departure in a time away from school. It didn't surprise me. I think sometimes it hits sort of a personal spot where it's sort of an open wound. And you know, you may have to back away from it for a minute, the act of making and it just sort of come back, regroup and come back when you feel a bit more. Not only confident but you have a little bit more time to heal. I'm glad to be back and stronger. So Unknown Speaker 29:43 I was able to explain what was going on. And I was able to get accommodations. Now he's more understanding. He knows he helps support me in any way he can. He wants you to succeed in your career. I've really seen her Unknown Speaker 30:00 become more comfortable, more confident with expressing not only her notions of misophonia, but but just in general in her own her all of her work, Transcribed by https://otter.ai ========== 0:29:30-0:59:30 ========== Unknown Speaker 0:00 Come back, regroup, and come back when you feel a bit more, not only confident, but you have a little bit more time to heal, Unknown Speaker 0:07 I'm glad to be back and stronger. So I was able to explain what was going on. And I was able to get accommodations. Now he's more understanding, he knows he helped support me in any way you can. He wants you to succeed in your career, Unknown Speaker 0:29 I've really seen her become more comfortable, more confident, with expressing not only her her notions of misophonia, but but just in general, in her own her all of her work, there seems to be a bit more sense to be vocal. And she's just sort of being a bit more communal, offering feedback to her fellow colleagues and peers. I think the one class that maybe helped her with that is a newer class that we teach here is a studio art internship, Jessica was nominated by us to be one of those students. And I think that that's really gotten her out of her comfort zone. Unknown Speaker 1:08 A real art to me is expression and feeling, just painting or printing or photographing what you feel, seeing how people can relate to it and express themselves through your work. And so it can be something very powerful. Unknown Speaker 1:27 Oftentimes, I hear the term catharsis are cathartic. So not only mentally or psychologically, but physically, they have something that's, you know, that's manifested into something that's real, whether it was in their heart, or their brain and their soul, once it's in front of them in front of their eyes. I think that, you know, a true sense of therapy and sort of maybe even that completion of that project allows them to be, you know, healed in a sense, Unknown Speaker 1:53 when I really start thinking about painting, I feel the anxiety, and I just have to release it somehow. So I begin building ideas from that, and start researching. And during the painting process I am getting, I'm releasing that negativity and all the rage and the anger and the distress and the pain onto the canvas. I've done work in the past that I didn't think was related to misophonia. But it was in a way, I remember making these mono prints of family issues, relationship issues. I think now that I look back, it was influenced by misophonia. And I just had to express it. Over time, I began to experiment with different mediums, different things that I could bring into it to really get that expression across the found objects by using the objects that are associated with the sound. And just like breaking them, and beating them up and then putting them on this board. And then burying it in media makes it therapeutic. And it's like I'm overcoming this, I'm not going to let it control me, I'm going to fight and live my life the way I want to. And my sound wave pieces. With the ripping of the paper, I'm expressing the feeling of being triggered, the sound waves going through the face and distorting it is kind of a way of saying that I'm in distress, I'm in pain, even you probably don't know it. But this is how I'm feeling on the inside in them just kind of bringing that outward. So I believe that portrays misophonia and our feelings very well. Unknown Speaker 4:24 people's reactions to my work, it's really helped influence me to maybe change some things. But most of all, what I really love about it is their feedback and hearing how it helped them in some way or how they're connecting with it. I've really experienced that, you know, with the advice that I'm getting from my classmates and my professors, you remember how Unknown Speaker 4:45 we met in print two? Yes. I asked you a question about my artwork. And I was asking your opinion of something and you had headphones in your room, and you didn't even hear me and I was just talking to air But, and then I finally got your attention. You're like, Oh, I'm sorry, I had my headphones in. And you were, I think I must have sniffled because I sniffle. And you made the most awful face, like, and you did your ear thing. And I was like, Oh, she doesn't like me. Oh, no, I Unknown Speaker 5:18 felt horrible. I'm like, Oh my gosh, yeah, I'm glad those no hard feelings. Unknown Speaker 5:21 Definitely not. But I can't read emotion either. So I'm just like, oh, did I mess up? Unknown Speaker 5:27 It's really hard sometimes. Because, you know, like, some people will just think you were just flat out rude. And, you know, they don't really think deeper than Oh, she's just rude. You know, Unknown Speaker 5:36 I just thought maybe I did something wrong. And then, you know, once I saw your work, I could really understand that moving on there. I think one of the things that brought us more closely together was when you opened up about your disorder, so I could like understand it, because I didn't even know that that was going on. I knew that you kind of dealt with like, depression, I guess, anxiety, but I never thought that it was like something I because I'd never even heard about it. And when I told you about what I was doing for my senior show, and doing different disorders, and painting people, yeah. And you offer to be a part of it. And you explained it in the art room, or the art library, I just, it amazed me because I'd never heard about it. And I guess that's how a lot of disorders go because people don't get awareness for them, but and then having our interview like going through there and sitting down and listening to things and even the music you showed me to relate and explain it. Like, if it was a monster, what it would it would be like it really helped me understand like, how it really feel it's not just an irritation is it's so much more like I was controlling for you. Unknown Speaker 6:53 I'm aware of misophonia I'm aware of her condition, I'm aware of this being whether it's new for our department in our area, she's just raised awareness at a level that I've never seen really before, especially with a personal body of work, the Unknown Speaker 7:11 feeling of seeing my work on display, it's it's different than seeing it in the studio. It just brings it into perspective. And you see how much stronger it is when it's up on the wall and it's ready to be seen. It's just a great feeling. Unknown Speaker 7:49 I hope that you walk away with a little bit more knowledge about what misophonia is. And what I made it for is creating awareness. Hope that continues. Unknown Speaker 8:02 Tom's that's events demonstrate that just says to mentor some fire services as well. Really talks about that. Unknown Speaker 8:21 Yes, yes. Like, some of this was actually I just smashed it right from the paper. Unknown Speaker 8:26 Don't take this round. Yeah. It's so frightening. It's beautiful. Okay, Unknown Speaker 8:33 I wouldn't let misophonia bring me down even though it's it's tried in the past, and almost succeeded. But I got back up and I kept going. And I think that is something very important for other misophonia sufferers to know, they don't need to give up. Unknown Speaker 8:53 misophonia really affected schooling because it was tough being in a in a room with 300 people taking a class because there's always the pen clicking the chewing. Even turning the page is the sound of writing. Unknown Speaker 9:09 The hardest thing to do is sit in a class when the person next to you is eating an apple or eating carrots. People tend to think that class time is snack time. And that makes it hell for me. I can't concentrate on what's going on in class. I can't concentrate on the exam I'm taking. Unknown Speaker 9:30 I find it very difficult to go to the classroom. It's a challenge for me each time I step in, to know that someone will be tapping their pencil or eating a granola bar. And, you know, my attention is immediately taken away from the teacher. And I struggle knowing that maybe half the class I won't be able to focus on what the teachers saying. Unknown Speaker 9:54 School was tough because you're in a classroom. Nobody recognizes this. You can't raise your hand Say, you know, Teacher, I'm sorry, can you have so and so stop, whatever the trigger might be. And so I would hear a lot of these, you know, in the classroom, there were like 20, some kids, you know, every period every day throughout the course of the day and, and testing was the worst, because it would be so silent. And I wonder if to this day if I didn't have the issues at home. And if I had had a quiet place, if this was recognized, and I had a quiet place to test in school, what my grades and scores might have been where I would be today, Unknown Speaker 10:33 my employer refused to make reasonable accommodations. Meaning work from home, maybe one day moving my cube to another area and in the office building. That escalated and I ended up leaving that particular employer. That was not a pleasant feeling. Because basically, what they were saying to me is that everything that you're feeling is a lie. You're making it up, or you're trying to use that as an excuse for XYZ fill in the blank. Unknown Speaker 11:06 When I'm in like an office setting, and all the computers, I just can't do it, I can't be in a cubicle, that noises all the talking of between people, I just, I can't, I can't do it. And that's one reason why I've, I chose a field in which I have more control over what settings I'm in a love Unknown Speaker 11:26 what I do, I love where I work, and everything about it, except for the fact that I'm almost repulsed by my environment at this point, because I've been here a few years, and the triggers have only gotten worse and worse and worse. And I'm afraid of what I'm going to do for the rest of my life, because I feel like it can only get worse in where you go, and what is the right career for somebody that has this. So we'll see what happens. But I would hate to have to start over in a whole nother workplace and explain to more people all over again and build that relationship and that trust all over again. And have it work or not work out. Unknown Speaker 12:09 You know, I managed for so many years to stay in corporate America and work my way up and, and make it work. But you know, as a mom of three now having been out of that for so long, if I were to go back into the work field and go back into human resource, I wouldn't go back and as a manager, I would have to start, you know, towards the bottom again. And I can't, I can't be in that bullpen setting again, it's just I can't I'm very limited in what jobs at this point I could take on where I would have quiet. Unknown Speaker 12:43 starting my own business was my way to control the noise to make sure I was the only one making the noise. If I'm by myself, when I started doing film and video, I thought I can sit in a soundproof booth. Nobody can hear me I can't hear anybody else. And when I started my screen printing business again it was I can do this by myself I can I can make a living and the noises around me were were my dryer and the press and everything. So that didn't bother me. The 40 Hour Work Week is is tough when you suffer. Unknown Speaker 13:23 And one of the reasons I'm self employed, so I can control my environment. And I can choose the people I work with that around me, the less I'm around the triggers, the better I can cope with them when they come along. So because a more relaxed, when somebody Unknown Speaker 13:39 that you work with triggers you unless you're somebody that you work every day, every minute with, you want to avoid having that conversation, because then if you don't guard very closely who you share that information with the whole office becomes aware the whole place becomes aware. And then you're really in for it. Then you're really in because the one in 100 person that wants to mess with you. Because they think that your condition is stupid is most certainly going to flush to the surface. If you don't guard that distance. Unknown Speaker 14:18 I'm still at a point where I don't want the people I work with to know about this condition necessarily. Don't feel that comfortable yet. But all day every day is constant triggers. I am constantly tense constantly in range and trying so hard to get my work done. It's really important for me to not give up and not quit because I'm doing what I do because I love it. But it's also a constant battle. When I say everyday is a living hell for me. I really mean it and I don't think other people understand how challenging it really is to keep my butt in my seat and not get up and quit. Big Because I have a passion for what I do, but I also am in serious pain all the time. Unknown Speaker 15:08 Socially, there are places that I just don't go. If I have friends that are going to a concert, I decline. It is not somebody that I trust money that knows that I have misophonia, I'm less likely to go, it limits more than I would like to admit the interactions that I have. But thankfully, I have friends who understand and who, in spite of the rejections still say, Hey, we're going over to so and so's would you like to come, I armor up. And I go out, and I have the best time that I can. And if it gets to be too much for me, my friends know, hey, where's Ray, he's gone. And they're used to me Unknown Speaker 15:47 by to stay with these select couple of people, Jason, my sister, that's pretty much who I hang out with, because they understand why misophonia they want to under they want to learn more about it. And they don't take it personally, when I do get upset, or when I can't do something. Unknown Speaker 16:03 The first instinct anybody has, when they get bad news about the way that they behave, is to take a defensive posture, and to and to remove blame from themselves. You know, you're not blaming them, you're just saying, Hey, this is a thing that bothers me. But they feel blamed. Unknown Speaker 16:25 I've lost the desire to want to be around people and a big regard. One, because I know they'll probably trigger me when I'm with them. And to because I've been triggered all week, I just need some time, and peace and quiet. Unknown Speaker 16:37 I like to interact with people, I love meeting people. And I love my friends. But and I'm always up for making plans and doing different things. But you you don't know if you walk into a party, if there's going to be food, for example. And who you're going to have to explain yourself to and how you're going to be able to react and act and who you trust. Unknown Speaker 16:59 What I look for when I tell someone that I have misophonia is not for them to think that I have an issue that is restraining me from going out and participating like any other person would in society, Unknown Speaker 17:13 I can't expose myself that often. So for me, I'm on maybe one two thing a week person, maybe something on the weekends, maybe something during the week where I meet up with someone. And that gives me a few days after if for whatever reason, I'm really affected that I can just kind of retreat into my home and to myself into, you know, as quite a life as we've been able to create here and just heal before I go out again. Am Unknown Speaker 17:39 I going to have to intervene into a conversation? Am I going to have to hold her hand am I going to have to cover her ears, because I know that she doesn't want to do it. Because it might allow somebody to know what she's going through. Those become daily inconveniences, to say the least. And they become part of your life that you live in fear of the next moment that comes to pass that might cause a trigger. Unknown Speaker 18:12 At the misophonia conference, there are a lot of parents who come who are extremely worried for their teenage girls and boys. And their main worry is not about their career. Their main worry is that is my child going to find soulmate? Are they ever going to get married. And I have to tell the parents that that's not the only thing that life is about. Life is about a lot of other things, and getting married and having a family. Yes, it makes us happy. But there is there are so many other things you can do with your life. And I'm grateful that I found all of those other things. So my life is meaningful without a relationship. Unknown Speaker 18:51 The more you're with somebody, the more ingrained in memory, you are going to associate that person with the noxious stimuli. What that does not mean this is not an inborn condition. That doesn't mean it's a conditioned condition. We don't know. However, once you've spent a lot of time with somebody who is tapping a pencil around you who is chewing around you, who is twirling their hair in front of you. And those memories are stored and associated with your physiological response of aversion and fight or flight, the more boom, they're going to come up faster and more frequently. Unknown Speaker 19:36 How can people trigger you that are not around? That's impossible. So it will always be the people that are around you. That will trigger you and these are your siblings, your family, your friends, your co workers, these are the ones who will who will who will trigger you Of course, Unknown Speaker 19:52 there is an anticipatory feeling about it, that when you live with somebody and you know them very well. There Something about certain aspects of their behavior that become triggers, I think, and you start to think about them and start to anticipate that they're going to come and then they become more of a trigger. Unknown Speaker 20:11 Trying to have a boyfriend was really hard. I had a boyfriend through high school. And he was the longest one for Jason. And he had his he always took it. So personally, we, that was all our fights was all misophonia related. And it's usually how it goes for almost all my relationships is, it always comes down to them holding it in that they're mad at me for misophonia and not telling me and or I don't tell them, they're triggering me, because I don't want to bother them. And so I then explode on them one day, Unknown Speaker 20:44 well, right off the bat, I didn't think it was true. I didn't know enough about it. As she told me more about it, it all make sense. It I mean, I've paid close attention to her facial expressions, the tapping on her legs, things that would indicate that she's being triggered. It's been a roller coaster that keeps me on my toes, Unknown Speaker 20:59 I have to explain to him, it's not something you can fix. It's not something you can even understand unless you have it. And that's okay. You don't need to fully understand it just being there and supporting me is enough. And so I think that's what he tries to do. Unknown Speaker 21:14 I was once in a relationship where things were going pretty well, you know, we had been going out for about a month and a half. She was really sweet. And, and we were very into each other, it was really fun time. And then we went out to brunch. And there was a gumball machine while we were waiting to be seated. In my brain, I'm thinking, maybe it's going to be okay. Maybe you will give this woman a gumball. And she will chew it with her mouth closed, and she won't pop it and everything's going to be fine. Or maybe just maybe you're going to realize that you're with the one person who can do all of those things. And it doesn't bother you at all. Well, that didn't happen. And and it didn't happen big. I got lucky when I met my wife. So when I told her after date, whatever, that I have misophonia. She said, Okay. And I said, we don't need to talk about it tonight. And she goes No. And she just went and googled it. And the next time we saw each other she was knowledgeable. She took the time, my wife has gotten very good at interjecting into these moments where I start to feel triggered and she notices that happening. And she'll turn to somebody and she will become the surrogate misophonia. Because she gets that if she can talk rationally about what's bothering me. Most people will stop doing whatever it is. Most people don't want to bother other people. What people don't want is somebody go, could you please stop chewing your gum? Could you please stop with the damn gum, you know. And that's what they get when a misophonia turns heel on a trigger. Unknown Speaker 23:24 I think some of the people closest to me, are sort of my bigger triggers just because I'm around them more. And I know I can't just run away from it. Unknown Speaker 23:36 I think it's going well for the most part. I mean, I tried to do what I can the tension kind of mounts and then you know, that'll cause a fight or argument later. And I won't know what the root of it is. So I'd rather just, you know, you told me up front, this is this what you're doing here is kind of bothering me a little bit. Is there a way we can work around this? I would do like to try and work with you. I don't want to make living with you. You know living with me? Hell for Yeah, Unknown Speaker 24:01 I'd start a list. And just every once awhile I'll give you this and say these are the things but I don't want to do that. It's not very personal. But it's been so helpful that you are aware and you are working to even just be cognizant that's that's the biggest thing. And that's really all I can ask for I don't need you walking on eggshells all day every day noises are going to happen. But just the fact that you you care enough to to be careful and that that means more than anything. Unknown Speaker 24:35 Everybody lives with challenges. everybody deals with something. And if you love someone, then it's a no brainer that you want to support them, be there for them be sensitive to them Be understanding. It amazes me that there are people who would actually mock people who are dealing with the challenge. You know, it just amazes me it's not natural, because if you really care about someone being a friend or a lover or husband or wife, or child? You know, you just have to be there for them. We all need each other, right? You know, we have in our house, we have that sign that says, Be kind to your fellow man, because everybody's fighting the hard battle. And it's true, right? And we never know what a lot of people are fighting in life. So just being there for people to care about takes care of everything. Yeah, it really does to that more people couldn't live with their philosophy issue bad, Unknown Speaker 25:29 it hurts the most, when it's the people I care about the most, because they're the ones that I really expect to understand. And, and if you're serving dinner, and, and I asked to sit at the counter, because it's a crowded table, don't be offended. Just say sure. Like, because that makes me feel bad when you insist, you know, and and this happens a lot, you know, with family and friends where they're like, no, no, no, no, we'll make room for you. And I'm thinking please don't, you know, I like that quiet little corner, I can sit there, let everybody out, you know, at least that can be a part of everything and not be haunted, you know, the whole time, Unknown Speaker 26:03 there's days that are better than others, where I am more sympathetic and willing to adhere to the criteria and make sure that I am in line with what's not going to cause her triggers. But there's other times where it becomes a little bit too much. And I would prefer for this not to be the situation prefer for her not to be affected by this. Unknown Speaker 26:31 You know, as the day progresses, I see how there are so many little opportunities where we could be close, and, you know, just remind each other of how much we care. And because of the sound condition, I pull away, to try to show in other ways, but you know, the chores and the laundry, and that and, and every now and then when I do just, you know, pull myself together and suck it up and, you know, find myself and you know, curl up next to you on the couch or whatnot. And, you know, for another couple of those are the little things that are probably taken for granted. And yet for me, it's so huge. And I just, I hope you realize that I am so aware of the burden that I put on you. And the kids and I feel that, you know when others say they don't even realize I have this condition, I feel like maybe I'm doing a good enough job hiding it here in the air that you and kids feel like you have a wife and you have a mother and that you're loved as much as you are. But on so many levels, I feel I fail you and I hope you you know that I do care. And that if there was some way to overcome this and, and be present next to you more often in more ways I would do it. Unknown Speaker 27:58 It sometimes takes those close moments away where we used to, and you probably hid things from me. But we used to be sitting next to each other walking next to each other. Unknown Speaker 28:10 I really was on my quote unquote best behavior. I was trying to stifle it. I was trying to, you know, prove not only to you but to myself that I could be this person that I want it to be that didn't affect me the way it does. And I really thought that you know what, with the right person in my life that if I really will it enough that I can make it go away. And obviously I fooled you for Unknown Speaker 28:35 I think a lot of people that have this condition would put on Unknown Speaker 28:39 a facade for as long as they can. And then eventually then it gives out, I just look at so many couples that don't have a great relationship and they're able to be close, they're able to share those moments on the couch and porch swing and walking. And, you know, not that we don't we do sometimes, but not as often. as I'd like. Yeah, and if this wasn't in the picture, as good as our relationship is, without those, I just, I can't even imagine how incredible that could be if those were a part of our everyday lives. And this always gets in the way it just always gets in the way Unknown Speaker 29:20 my sister and her husband have been very proactive in making my nieces aware of my condition. And so when I come to visit, the nieces are this special kind of vigilant where you know, something happens and they apologize and it's like, oh, great, you know, in some ways you feel a little sad because, you know, part of the fun of being a kid is being an unrestrained creature with no blame that comes your way. But at the same time, it's just so touching that anybody could be that consider it to watch them Transcribed by https://otter.ai ========== 0:59:00-1:29:00 ========== Unknown Speaker 0:00 So when I come to visit, the nieces are this special kind of vigilant where, you know, something happens, and they apologize. And it's like, oh, great, you know, in some ways you feel a little sad, because, you know, part of the fun of being a kid is being an unrestrained creature with no blame that comes your way. But at the same time, it's just so touching that anybody could be that consider it, to watchdog their own behavior, just to help you that again, that's love. Unknown Speaker 0:35 I feel like if my family or my friends are too accommodating, it can almost give me a pass, to react when I really need to become better at keeping it inside. Even though I like being validated that this is a real condition. In order to function in society, I can't be reacting or acting out the way that I feel like I want to inside. Because that could cause a whole myriad of issues. So I think there's really a delicate balance between people being willing to accommodate you, versus people really holding you accountable for finding ways to keep it under wraps, or to cope with it in a productive way. Unknown Speaker 1:26 If you're in a family, and you're young, and you tell that you're really bothered something, but I mean, your big bullying brother does it all the time just to bug you. And your parents don't don't take you seriously. I mean, if you will grow up with some trust issues. Definitely. There's no question about that. Unknown Speaker 1:44 I know, parents might be afraid if your kid you know, displays behavior that is odd, especially if it can't be diagnosed, at whatever time this happens. Don't let your fear slough off onto your kid because it will. Like the more afraid you get of what your kid has, the more afraid your kid is going to get themselves. So even if you want to do everything you can to help them if you want to not miss any opportunity you can to possibly hear them. Think gotta let them be independent. Don't make them feel ashamed for it please. This they're not gonna grow up happy if you do. Unknown Speaker 2:49 Rely raise animals. So it relieves some of the stress for me, if I go out and sit in the barn brings me peace, it's it's a good thing. I don't know what I do about that. Unknown Speaker 2:58 Living with saneras misophonia can be fairly difficult, especially when I have it is well, we tend to work off of one another. So when she is upset with me doing something, say chewing with my mouth open or tapping just out of the corner of her eye, then I tend to focus more on what she has to say as well or what she's doing with her her body language. Unknown Speaker 3:23 It's nice having someone to talk to about I mean, like talking to my son, he, you know, we can say oh my gosh, last night dad was you know, yeah, I know, was not the worst. But I'm not sure it's we're pretty close anyway, so I'm not sure it's brought us any closer together. But Unknown Speaker 3:38 we've been together 27 years. And I would say that it was different from what my people might consider normal. Unknown Speaker 3:46 Even if he's irritated, he still tries and I appreciate it. I mean, that's really all I can ask for is that he tries Unknown Speaker 3:55 in a way from my personality, it's kind of nice to feel comfortable, just, she's not gonna care if I gotta be in the garden all day, or if I go up to my, my study and work because she probably doesn't want me around making my noises in a way that's liberating, I guess. Unknown Speaker 4:13 People say, Oh, I look forward to being old. And, you know, we sit in our living room together and read a book, you know, and I think that doesn't sound enjoyable. I would like for that to be enjoyable to sit in a room and you know, be able to turn pages and not worry about whether his page turning and rubbing is gonna get on my nerves. It's just not right, you know, you should look forward to sitting in the same room. So it affects togetherness. Sure, Unknown Speaker 4:39 I think we talk a lot about things a lot more than lots of people do. And that that's important. I think that's important to keep your relationship strong. You have to talk about things that bother you right away. Unknown Speaker 4:52 You only get mad at the people that you love you. Dude hold grudges more with your family. So I guess the fact that we see each other all the time. That's why it really gets on our nerves, especially because they know what gets to you. Knowing that my mom and I both have it really has kind of minimized the stress. Unknown Speaker 5:15 Life before misophonia was wonderful life with misophonia is still wonderful after misophonia, she was already in the sixth grade, we continued to do the same types of activities. Obviously, there were different because she was older. But in terms of our social, and my relationship with her as a mother did not really change. I mean, if anything, it probably brought us closer, we had to really tackle the difficult emotional component of it. And try to figure out it was like a research for both of us, what is this thing that's taking your joy away kind of thing. Unknown Speaker 5:52 As I grew older, I became more distant towards my family members and my friends, sometimes, they would often have fights with me about it, how I would be triggered by these noises. And that really created a lot of tension with my all of my relationships, actually. And I felt really bad. The worst part about having misophonia and having to say, things to your family members about you know, stop doing these noises. It's the guilt that really gets to me also, Unknown Speaker 6:27 pretty much everybody in my family has observed a melt down, because of a specific situation that has happened, it has happened in front of pretty much everybody in my immediate family. And they know the situation is real. And they feel her pain, they see it in her eyes, in her voice in her emotions in the way she moves in the way she talks in the way she reacts to things. So we've been through trauma together as a family, it's undeniable that this is super intense for her. And that is extremely real, the thoughts Unknown Speaker 7:00 are definitely scary. They especially are scary to me after the situation has gone down. And I analyze what what what I was doing what I was thinking, and it really scares me because I don't want to have these thoughts. I don't want to have these reactions. Unknown Speaker 7:18 Whatever Brianna needs to do. To get through the crisis of the triggering sounds, the offending sounds, the situation that's really affecting her. It's up to her to decide how to best do it and I support her 100% Unknown Speaker 7:34 withdrawing from family members. It's a coping mechanism. But for relationship values and building, I don't think it's the best because I definitely do not want to lose my relationship with that person. I even have a fear with my mom, now I'm I am much distant from my mom than I used to be only because of my misophonia and noise related issues. And that's, that brings me a lot of guilt inside. Unknown Speaker 8:05 The longer she gets to understand this condition, how it affects her, she will start making the correct decisions to make it a little more palatable in terms of how she organizes her life and her surroundings. Unknown Speaker 8:17 I just love how you're always fighting for me, and I appreciate that. Well, Unknown Speaker 8:25 it has been quite a challenge. It has been quite an honor. And whatever I have to do to keep fighting until my last breath, I will continue to do to try to guide you to try to help you to try to intervene. I just want to make sure that you have the skill set to do it on your own. The day that I'm not here because people need to empathize, they need to help. And if they're neighbors that when neighbors do family members do that friends do that. This is civilization. It's just I need to act accordingly. Okay, it's just like with any other any other disability or any other issue that people have. You treat people with empathy with compassion, because we live in a in a civilized society that demands that from all of us. I don't know what else is coming. But this has been a tough one. And we're learning a little more every day about it. And hopefully we'll learning more about the medical reasons for it and maybe some treatment later on that will help minimize the effects of it. If not cured altogether. There's always hope for that. So Unknown Speaker 9:36 I'm 45 I realized that I had misophonia when I was seven I have a husband Chris who does not have misophonia and I've got five children who do Unknown Speaker 9:49 living with a entire family that has musical fonio is sort of frustrating to me, because from my background. I've always been a noisy guy And when I when I have to pay attention to what I'm doing and want to and the sounds I'm making it, it's almost a slight anxiety for me as well. We're a normal family Unknown Speaker 10:15 only it's, it's a little touchy sometimes, but we're all aware. So it works out, you know, we laugh about it, you know, we glare at each other. It's just us. Some of our house rules are definitely no chewing with your mouth open. No drive. Unknown Speaker 10:38 No clicky pens. No screaming that to me, but I can do it right? On the outside, but I don't Unknown Speaker 10:50 do it around anyone else really, Unknown Speaker 10:51 right? That to me on the outside of me is a phony that is so strange to me. Because when you were in the hospital with her, and you said, I need that ice and you were crunching and crunching I trigger her but she doesn't trigger herself. Guilty. The relationship between me and my wife for for one, I think is has slightly suffered. Because I feel you know, myself walking on pins and pins and needles sometimes on eggshells. And there is a certain wall that I think has been built, you know. And it's emotional for me because I just love her. Unknown Speaker 11:44 My husband is very accommodating. And my children know what my triggers are. Because they know they don't want to get yelled at. or, excuse me, can you leave now? But yeah, I've taught myself how to deal with it. And I think, um, you know, okay, there are days where I'm, you know, by myself a lot, I'll go and retreat, you know, out back or, you know, in my room can't wait for bedtime sometimes, because I just need it to stop. And it's not like anybody's doing anything wrong. It's just because it is Unknown Speaker 12:20 my daughters, they're experiencing a lot more triggers as they get older. But I've also noticed that they're trying to deal with it as their maturity level grows. Unknown Speaker 12:33 You know, we choose to laugh about it with each other. So I think it's important to, you know, just say, hey, it's here. Let's accept it. Let's figure out how to deal with it and move on. Some days are easier than others. Unknown Speaker 12:51 My biggest supporter and biggest cheerleader, all my life is my mom. We have been thickest thieves since I was a kid. And even though I don't think she understands fully, what misophonia is, and its impact on my life, she goes out of her way to make sure that whatever she can do within her power to make me more comfortable. She does. She has all these clocks in her apartment and just the second hand ticking I go to our apartment, and it's just like so instead of just asking her I used to just take the batteries out of the clock. Unknown Speaker 13:27 Tick tock tick tock. So I told him I said at least when you move my clocks to me where they are, when you get home, I call him I say Where are all my clocks. So he said, Oh my God, just Oh, I'm sorry, I forgot I took them all down or took all the batteries out or and I just started going through the house and I did the kitchen cabinets and get some oil and oil and all the doors so they didn't squeak and we laugh about it because the door up in the laundry room is still slides over and hits me in the back of the head because I greased it so well. Unknown Speaker 13:57 I think I was really nervous to tell my mom about misophonia I was nervous to tell anybody about misophonia initially because I didn't fully understand what it meant. And I was unable to articulate what it actually was and how it affected me. Unknown Speaker 14:17 So I always say you're only as sick as your darkest secret. If you don't let go. You're not going to be healed. Unknown Speaker 14:25 Had I not told her what was going on. I have a feeling that our relationship could have suffered. Because I already lost one person to misophonia and I was too afraid to have that happen with her. Unknown Speaker 14:43 I told my sister one day we were shopping so you know I'm gonna get a piece of fabric and put in the kitchen cabinet and separate the plates so when he sets the table or puts the dishes back there's a cushion there. Unknown Speaker 14:55 The next time I was at her house, open the cabinet and I just stood there. And I was like, wow, only somebody who loved you would do something like that would junkie up her dishes and go through all of this extra stuff that will affect her. Whenever she goes to reach for a plate, she did all that just for me just so that I could be more comfortable in her home, so that we could actually be present with each other and have fun and interact. Unknown Speaker 15:30 He doesn't share everything that he feels when he feels it, you know, but I don't think he feels the rage that he used to, Unknown Speaker 15:39 as much as I know, you support me with misophonia. As much as I know, you and others go out of your way. As much as I tell other people that it's real and it's valid. I still feel crazy. I feel like if I told you everything, the full extent of misophonia I really feel like you would look at me a little different. Because of the triggers that you know about, that I tell you about. That's just scratching the surface. Why are these thoughts in my head just because I hear this noise. We go from laughing and joking. And then I'm in a whole nother place instantly. And keep fighting and fighting to come back to reality. And then how do you maintain a relationship with somebody, when they disgust you? Oh, when you can't look at them all day, it never goes away, ever. In all the coping mechanisms in the world. It makes it better. But it doesn't make it go away. Unknown Speaker 16:55 Ideally, we would stand across from our children, so we could you know, converse as a family. And that's kind of how we envisioned it. And we planned out the kitchen and figured out what we had space for. And I really look forward to that once they were out of their high chairs, you know, they would all be sitting in front of us and we'd be this happy family. And I kind of ignored my Unknown Speaker 17:14 issue, it tends to unravel somewhat quickly from this ideal picture. So we're all going to eat together to I'm gonna go eat over here, you guys eat over here, we'll make sure we turn on some sort of white noise, whether it be music, which typically would need to be pretty loud or a fan. And then that tends to drone out the conversation or drone out the at least eating noises. Unknown Speaker 17:48 And most often even that because the visual, I find I'll sit on the stairwell and I can look up when I feel brave and I can look down you know to eat my food. It's not obvious when I feel a little less brave. Unknown Speaker 18:07 When she is really having a bad day, she's highly sensitive. And if somebody closes the back door a little bit too loud, she will stomp on the floor or or punch the walls or just she needs to get out her aggravation. She can be a bit mouthy. When she's aggravated. The good part is I know it's not cam, and I don't define her by that, to me, it's, it's the misophonia that triggered her. But that doesn't change who she is, as a person. She's a really good, really good person. Unknown Speaker 18:37 We do love each other. And that'll never go away. But I just can't stand being with her in person as much as I would love to hang out with her have a regular relationship with her. It just it's not going to happen anytime soon. Unless a miracle happens. Unknown Speaker 18:58 The misophonia really, really puts a damper on things because there are things we can't do as a mother and daughter together. But, you know, if she wants to shop for a dress, instead of going together, she'll maybe go to the mall and text me, you know, 27 pictures. How's this one? How's that one? And we'll laugh and have great conversation via text. So if we didn't have text messaging, I don't even know if we would have a relationship. Unknown Speaker 19:25 When I'm in my race car. I just love it because there's no worry on the world that I'm going to hear someone coughing or sniffing or sneezing or chewing their gum. It's just like the loud noises of your race car and everyone else's race car. It's actually soothing to me because that's the time where I really get to relax and I have a nice adrenaline rush. Why didn't you Unknown Speaker 21:25 any given person is born with only so much resilience. You can only handle so much of what life throws at you, before something starts shutting down or some system of defense kicks into gear. Unknown Speaker 21:45 You know, there was a time where that rage and that fear and hopelessness of just not being able to get away from the sounds, I resorted to cutting I, at one point tried to commit suicide i i feel for people out there, I get it, I get what it's like when, when your brain just doesn't make sense when it doesn't function the way you want it to the way others seem to. It takes a toll. Unknown Speaker 22:15 We're so strong constantly, that sometimes we just don't have the strength. Unknown Speaker 22:25 One of the things we really need to do is pull together as a community and learn, we need to find resources to explain what we know about misophonia. And explain what we don't know, Unknown Speaker 22:41 even if finding a cure for misophonia is far off in the future. That doesn't mean we can't start addressing things. Now. Unknown Speaker 22:47 You can't simply rely on what people tell you when you're trying to do a very precise analysis scientifically. So any condition where you have a stimulus and a response, you can figure out how the brain is doing that. So that's a tremendous advantage in any kind of sensory related problem. Unknown Speaker 23:05 Or if we're looking for research into misophonia. We need experimental research, experimental audiologists, experimental psychologists, and of course, neuroscientists to get the neurobiological causes of it, Unknown Speaker 23:16 it would be a huge team that you'd have to assemble. But that's always the case. And it's not like you all of a sudden built an institute where you have one notice are kind of one of each person, but instead people on working, working on anything, whether it's autism, schizophrenia, depression, anxiety, collaborate, they create teams that are distributed around the country if necessary around the world, we performed Unknown Speaker 23:40 a study in which our team used functional magnetic resonance imaging to measure brain activities of 42 people with and without misophonia. The brain imaging revealed that people with misophonia have abnormality in the emotional control mechanisms, which causes their brains to go into overdrive when they hear trigger sounds. The results of this study clearly demonstrate critical brain changes as evidence that misophonia is a neurological disorder. Unknown Speaker 24:15 I don't know how many millions of people have it, but nobody ever talked about it. Because, like me, everyone thinks it's just them. It's their Quirk. It's their idiosyncrasy. It's their problem. And now suddenly, it's a real condition with a name that's being studied. That more and more people saying, oh my goodness, I feel the same way when this happens. Unknown Speaker 24:41 Because of awareness being spread, I am able to have more positive outlook on what's going to happen to me that, you know, even if I do get more triggers, that's okay. I'm still I'm going to be okay, because I've met people who've, you know, live twice as long as I have and are happy and Because of that, I know that I'm going to be able to be happy and live my life with this problem. Unknown Speaker 25:07 Well, since it's gotten worse since I was a kid till now, and progressively, I assume it's going to get worse. But I'd like to think it's plateaued. Maybe this is it. Unknown Speaker 25:16 If it continues, the way it's been going, it's only been getting worse. And the farther I look into the future, I just think, how much worse can it get Unknown Speaker 25:25 when I move into a house someday or get married or have a kid that it will be there for sure. And it will affect how I live my everyday life. However, I will not let misophonia put a limit on what I can do, when I will not let it restrain me from taking risks or making choices, and stepping out into places or spaces where I know that I will be triggered. And I think that misophonia has only made me a stronger person. Knowing that I have fought all of these many battles every day. The hardest Unknown Speaker 26:03 part, I think would be if I didn't have my husband, because I can't imagine that there'd be anybody else who would live with me or share my life with me. So as selfish as that is. That's my biggest concern. Otherwise, I can live with it. But I don't want to live alone. Unknown Speaker 26:24 I can't see a future as being bleak. When I can remember what the past was like before I had a way to explain this to anybody. So when I think about the future, I think very, very positive thoughts. When the term misophonia was coined, it was a great relief to me. And somebody pointed out to me that, hey, you're a songwriter, you should probably try to employ your skills to make people understand what you feel regarding this issue, and that seemed like a good idea at the time. still seems like a good idea. Anyhow, I hope you enjoy this song. It is the product of the source of my greatest misery. So I hope it entertains you. Unknown Speaker 27:32 Oh, we got the plastic play. In my opinion, worst mistake. No one should have to Unknown Speaker 27:48 eating bread rows, each meal do we need fit to both stitch you it was in quirky. It wasn't funny. It was in some any tree could wash begin my constant companion spending in my grave. Unknown Speaker 28:43 My body and my mind is not made to live in this world. Because my sensory processing problems are getting into the way of living a normal life, Unknown Speaker 28:55 I don't look at misophonia anymore as a negative, or that I'm not deficient in some kind of way. I've just had to adapt to a new normal. Unknown Speaker 29:03 The more you speak about something, the less power it has over you. Unknown Speaker 29:10 And don't really have a plan. I'm just going to really just go off into the world with misophonia and see what's the best that I can do for me. Basically, Unknown Speaker 29:22 it's going to be a continuous struggle, but it's not going to be like this struggle of despair. It's going to be a struggle with all these other positive people who are also struggling with me. I don't have to do it alone. Unknown Speaker 29:36 I just tried to look at the more positive side and the negative because if you look more towards the negative then that's when you're gonna spiral out of control and end up in a dark hole somewhere. So I'm just going to keep pushing forward. Unknown Speaker 29:56 I refuse to believe that my path Transcribed by https://otter.ai ========== 1:29:00 ========== Unknown Speaker 0:00 What I wish is that one day I wake up and I forget the misophonia exists. Unknown Speaker 0:07 It's always going to be a part of my life. It's always going to be the worst part of my life, but I'm never going to let it run my life. Unknown Speaker 0:14 No one wants you to have to live this way. Transcribed by https://otter.ai