Paige and the Hesser family - Student's journey from Misophonia diagnosis to advocacy.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 7. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Paige and her family, Dad Michael and Mom Kelly. Paige is starting high school, and we talk about the family's experience so far dealing with Misophonia. It's been quite a journey, but Paige's parents have been determined to find solutions and coping methods for Paige. The family has also been part of some major advocacy projects in their hometown, including Halloween and Christmas fundraisers and Misophonia Awareness campaigns in partnership with their mayor. After the show, let me know what you think, as always. My email is hello at misophoniapodcast.com or find me on Instagram or Facebook at Misophonia Podcast. And please head over to leave a quick review or rating wherever you listen to the show. It helps drive us up in the algorithms and reach more misophones. Now, a few of my usual announcements. I want to thank the incredible ongoing support of our Patreon supporters. And if you feel like contributing, you can find out about the various levels at patreon.com slash misophony podcast. And I want to mention that you can pre-order advanced copies of a book that Dr. Jane Gregory from Oxford and I did called Sounds Like Misophonia. This will be coming out this fall from Bloomsbury Publishers. And it's getting very close now. You can find pre-order links in the show notes or on my social pages. And they have Amazon affiliate codes, but you can also get them from actually anywhere you find fine books. This episode is also sponsored by my personal journaling app that I developed for iOS and Android called Bazel. Bazel provides AI-powered insights into your journal entries. So you can write a journal entry, it'll summarize it for you, and then the next day it will prompt you with a customized prompt based on your recent entries to try to guide you in your journey. You can find links to show notes. It's basically hellobazel.com. All right, now here's my conversation with Paige, Michael, and Kelly. Paige, welcome to the podcast. It's great to have you here. We also actually have Michael, I think your father here as well. Yeah, great to have all you on the show. Thank you very much. Thank you. And yes, I forgot to mention we also have Kelly. Anyone is welcome to speak. I'd love to hear, you know, I think from anyone in the family, because as we all know, it affects the whole family. So I'm sure everyone has a story to tell. But I guess, yeah, starting with, maybe starting with Paige, do you want to just kind of tell us a little bit about who you are, where you are, what you do?
Paige [2:51]: Well, I'm Paige and I'm going into high school. And then I got diagnosed with Metaphonia, I think it was 2020, 2021. Yeah.
Adeel [3:04]: Gotcha. And was that like a, you know, kind of a long time coming? When did kind of the signs start for you?
Paige [3:13]: I started noticing it a lot during COVID. Just like eating at the dinner table, just little noises, especially my mom. I noticed the way she eats. Little things like that would kind of start to bother me. And then as... lockdown as we were kind of at home the whole time it just started to get worse yep i think just being around everyone and everything just kind of started to escalate
Adeel [3:37]: Yeah, it's kind of rough because I guess around COVID, you would have been, and if you're going into high school, that would have been around kind of the sweet spot of when this starts for, it seems to start for most people. Did you notice, did you have any clue, maybe thinking back, any memories from like before COVID? Maybe your parents might remember something. I'm just curious.
Paige [3:59]: I do remember a little bit before. Same thing with my mom and just little things like the way she would drink and just like if she was having a piece of candy. I remember that, but I don't. That's all I remember so far of that far back.
Adeel [4:12]: I remember there were things that Paige handled differently. than our other daughter. We have an older daughter. And not in a bad way or an incorrect way, but just differently. And looking back on it with hindsight now, we didn't find out until we were getting her treated for the misophonia that she also had aspects of OCD, which is very common. And at the time, we just thought she was really, really organized. Yeah. if she had a particular way she liked to do things and she liked order and, and things, you know, uh, set up schedule wise. And we, she was like this and she was, you know, in preschool, we would have, uh, problems with her if you changed a plan or changed an outfit. And we just thought that was her personality. And looking back on it now, we can see where those little hints of OCD, uh, you know, type personality traits were always there. And we just, we just never knew it until we found the word misophonia online. Right. So I guess knowing that you had, were you diagnosed with the OCD before misophonia, Paige?
Paige [5:28]: Yeah. Yeah. I was diagnosed with anxiety and OCD, I think a couple months before.
Adeel [5:35]: Oh, OK. And when she says diagnosed, it wasn't medically diagnosed. It was it was Paige on the Internet. We we were struggling to find out what it was. And Paige would have these emotional reactions to the dinner table, you know, not liking certain sounds. And it was causing arguments. Well, Paige, we're doing everything we can. You know what? More because we'd never heard of this thing. And it just didn't make sense that this was just anxiety, that it was just OCD. So I'm always of the idea that there's nothing new under the sun. So Paige couldn't be the first person to go through this. So I hopped online and just started searching. severe reactions to sounds, anger at dinner table, and just trying to see if anybody had found anything like this and dealt with it. I was looking more for like concrete solutions, like what did you actually do? Did you have one person eat separately at a separate time? That's what I was looking for, was just real life, you know, tips and tricks. And then we found a blog where a woman was detailing her experiences in lockdown with her boyfriend. And I started reading it. And you could have taken that woman's name out and put Paige in there. And at the time, Paige would hide in her room to be away from us. And I texted her and I said, I think I found something. And she came out and I remember it like it happened yesterday. She was standing on our second floor looking down at me. And I read this woman's story and Paige said, Dad, that's my life. Wow. Yeah. Yeah. Yeah. That's how a lot of us feel. And then we go down the rabbit hole of like, um, doing all this research and finding many stories. Uh, but that's, that's great that you were able to do that and, and, and, and find that. So you're searching for severe reaction to sound. Yeah. I'm always curious kind of what people search for. Um, But it sounds like, Paige, were your reactions at the dinner table, they ended up, you were able to, basically, you left the dinner table at some point? Was that kind of the common routine, I guess? Yeah.
Paige [7:44]: Towards the beginning, like when it first started, the reactions were nowhere near how they were, like right now, if I were to hear them, or how it was maybe a year ago. I mean, it started off, I would leave, but it wasn't as severe as it is.
Adeel [7:59]: Uh-huh. So it's gotten worse now.
Paige [8:02]: I mean, I haven't, like, heard them eaten so long because I've been so separate.
Adeel [8:06]: Yeah. Gotcha.
Paige [8:08]: But I know, like, a year and a half ago, if I were to hear them, it would be so much worse than how it was.
Adeel [8:13]: Yeah. Was it a lot of also before the leaving? So you would sit down at the table, right? So you'd start by sitting down. And did you know that something was going to come? Or a lot of us kind of we forget. We just kind of sit down and then, oh, yeah, I got misphonia. Then we want to leave. I'm just curious kind of like how your routine was for you.
Paige [8:34]: Yeah. Before we knew about it, I would just sit down and I kind of expected something to happen, but I still kind of thought it was my problem. So I didn't really like realize it. So I would most of the time just start sitting down and kind of already think about it, but then I would just leave.
Adeel [8:49]: And she's incredibly stubborn and headstrong. So if Paige has a bump in the road, she doesn't change directions. She plows through the bump. Or she smashes it down to flatten it for everybody else. So we, to this day, have to tell Paige, you don't need to fight through this. If you're having a problem, take a break. Step away. Your personality. Yeah, yeah, yeah. she's like a marine she wants to plow through it so i'm sure there was i'm sure long before we knew there was a problem she was white knuckling it through many dinners ah okay interesting so your instinct was to this this is my problem i'm just gonna try to live through this as much as possible yeah yeah okay what about at like school did you were you also triggered at school um when it first started no
Paige [9:37]: Not at all, actually. I didn't, there weren't, there was nothing really going on at school. It was mainly just sounds at home. Yeah. So there was nothing at school, even in, cause I, it started in probably like fifth grade, the end of fifth grade. And then in sixth grade, I still didn't have anything, but then that's when I had stuff in seventh grade.
Adeel [9:58]: Gotcha. Oh, what do you mean? So on the parental side, we knew this was happening during lockdown and knowing she was eventually going back to class. We were, you know, terrified of how that was going to how that was going to play out. Yeah, because, you know, we just knew how it was at home. And it was it was bad. It was it was really, really bad. We didn't know how to help her. She'd be in a room screaming, help me. What do I do? What do I do? And there was I couldn't hold her, couldn't touch her. My voice would set her off so I couldn't calm her down. Yeah, my wife was I think my wife went about two months with hardly talking to Paige because her voice was an instant trigger to Paige. yeah did it um did did parts of it subside then i mean you're able to hear your parents voice or i'm just curious obviously you haven't eaten around very much um uh yeah i haven't eaten around them since i don't know probably 2020 i think but i think probably because the medicine
Paige [10:59]: And I'm not so fed up by the time I'm already like talking to them. I'm not dealing with what I'm not eating around them. So I'm not hearing as much. So I think I have a little bit more of I'm able to listen to them. And it doesn't seem as bad as it was, maybe probably because the medicine is helping a lot.
Adeel [11:17]: Yeah, maybe your nervous system isn't so riled up. I was keeping a journal, just writing notes down in my phone a little bit. And I remember exactly when it changed for us. Paige was having, if her misophonic reaction is on a scale of 1 to 10, she was having 12s multiple times a day. It would just be me saying the wrong word or making the wrong sound. Because at the time, we didn't know triggers yet. We didn't know what it was. And it was an instant off the charts. Paige had this adrenaline dump and rage, and she didn't know how to get rid of it. And then it just so happened with school. that there was like a three-day weekend with teacher you know institute days and then there was like two or three snow days we had so paige just by happenstance happened to have this six-day break And at that time, school was a big problem because she couldn't do homework at night. If she needed help, I couldn't talk to her. We'd have to play white noise or brown noise, drowning me out. We even talked about learning sign language because I didn't know how I'd help her with homework. So she had this six day break. And we went from having daily off the chart explosions to she went two days without one, then three days, then four days. This was before the medicine started. So we knew right then, oh, this is, this has, stress has a huge impact on this because the only thing that's changed is our stress levels. We're still making the same mistakes here and there. The only thing that changed was our stress levels with school. And it was the next, I'm sorry, go ahead, Paige.
Paige [12:56]: And I know the anxiety was pretty bad too then in school because I was always, my fear was I was worried that I was going to throw up or be around someone throwing up. And so that's probably why I was so much less stressed when I was at home because I wasn't having to worry about that at school. So I think that with the lower stress, I was not as on edge, I think.
Adeel [13:19]: Gotcha. Sorry. Yeah, no, I was going to say, so you've mentioned medicine a few times. So at some point, it sounds like you went to a doctor, hopefully a gut medicine doctor. Well, yeah, we changed therapists a couple of times because the first therapist wanted to do exposure therapy. And I explained to her, I said, well, have you heard of misophonia before? And that was the biggest gut punch was that night we found that article. I thought, cool, we have a name. We know what it is. Excellent. You know, now tomorrow we're going to go down to the misophonia clinic and we're going to get some anti-misophonia medication and we'll be good in a week. You know, so the next day I looked up, I go, OK, treatment for misophonia. And that was where I found the I think it's the Misophonia Institute or the Misophonia website where it lists worldwide providers. And there were eight. Right. Eight worldwide. Yeah. And we talked to Paige was seeing a therapist at the time for the anxiety. And told her about this and she said, wait, it's Miss a what? And I thought, oh, that's not a good sign. So did they tell you, did they suggest the exposure therapy? Because I've heard exposure therapy is used for OCD. That woman actually wanted to come into our home and have us perform noises in front of Paige to get her over. And so we said, no, next. And Paige ended up, we found another person that dealt with us. Well, first we were on a waiting list that was two years. to see one psychologist. And in the meantime, we found help for Paige with her OCD and anxiety. And she was on a small medicated dose for that. And it was apples and oranges. It was night and day. The misophonia didn't go away, but knock on wood, we haven't had one of those number 12 explosions, I don't think, since then. Yeah, that's interesting. Yeah, go on.
Paige [15:20]: Yeah, definitely not as... I haven't had one that bad in so long.
Adeel [15:27]: Yeah, it seems like in this case, I mean, a lot of people in this point, obviously, like in your case, have comorbid conditions like the anxiety and OCD. And yeah, I mean, obviously, they're separate, but they do affect each other, as you've learned, and the stress does as well. So it's interesting to hear, like, very clearly in your case, that reducing anxiety Obviously, it's not going to totally get rid of the misappointing because it's a different beast, but it definitely does reduce it because you are not as stressed.
Paige [16:03]: Yeah, definitely.
Adeel [16:06]: And then, so how long ago was that?
Paige [16:11]: I think probably, that was probably like a year and a half ago, I think.
Adeel [16:15]: okay um and since then yeah have you uh obviously you've been um quite involved in in misophonic advocacy i'm just curious were you able to find finally get to a therapist that maybe specializes in misophonia or um yeah we just we just um dad do you remember when we started seeing sarin when was that i i'm terrible on dates page it could have been six months ago or seven years
Paige [16:42]: I think that was about a year ago. I started... I started seeing a doctor. She...
Adeel [16:51]: she had some like degree or something where she was able she knew what was it dad i don't know what it was where she had she knew some something about misophonia yeah yeah that was yeah so they treated ocd and they were familiar with misophonia it was like six degrees of kevin bacon i found one therapist that definitely worked with ocd And then they had they had an offshoot office and that person had another office. So we ended up finding somebody that it was the first time we'd heard somebody say, oh, yeah, I know what misophonia is. And they were trying things that it wasn't exactly exposure therapy, but it was it was giving Paige coping skills. And Paige was still pretty uncomfortable with it. And I remember at one point, Paige and I were in the office. They would teach Paige to hyper focus on something. And it. And I remember at one point she had me in the office wanting me to play cards or something or chew gum while Paige was playing cards with her. And I asked her the question. I said, I said, my concern. OK, I don't really get this. If it's an instantaneous reaction, where in there does Paige have time to perform these, you know, these coping skills?
Paige [18:01]: And I told her that, too. And she. Yeah, I'm sorry.
Adeel [18:05]: Yeah, no, no, absolutely. I said, when does she have time then? If it's instantaneous, that's what I'm not understanding. And she kind of looked at me and she said, but is it really instantaneous? And I remember looking at Paige and we're both like, oh, my God. Did she explain that statement? It's instantaneous. And she said it again. She goes, but is it really instantaneous? And I said, let me explain it to you. And I went through something that had just happened the night before. I said, my two daughters, my wife was working. We were laughing and joking, having a great night. They were just going to bed. Everybody was fine. The night was almost over. I leaned over and I made a sound when I was telling my oldest daughter goodnight. Paige went instantly screaming and crying. I said, so it's instant. And I knew right then. I don't care what they say. They don't know what misophonia is. And I remember I went out to the car and called my wife and I said, we can't keep seeing this. We have to go somewhere else. And that was the woman that kept saying the goal was to get Paige back to the dinner table. Okay. Do you know what they were implying by that? That maybe it was, I don't know, like premeditated almost? No, that it was a slow build. That when Paige was exposed to a trigger, she was to recognize it was happening and then calm it before it got out of control. Which to me means you understand it as a control issue. Right. It's not anything you can control. It seems like a control issue. It's a rookie mistake. Right.
Paige [19:37]: And dad, mom was there for most of it though. But she would, if you weren't there, she would have mom come in and chew gum there. And she would just say, okay, let's play Uno and then focus on, I don't know, like the cars. And then I would do that and I would be crying. I'd be sitting there sobbing and then whenever we would be done, I'd say like, I don't want to do that again. That was really hard. And then the next time, then I had to sit outside with her and she would chew gum for hours. like 45 minutes, just me sitting outside listening to her chew gum and then trying to focus on like the bird that I can barely hear.
Adeel [20:12]: Yeah, yeah. That's straight up ignorant exposure therapy. And see, and as a parent hearing this, it kills me to know I subjected her to that. But we asked over and over, we're not doing exposure therapy, correct? And they said, no, it's not exposure therapy. And I forget the term for it. It was a different type of... Yeah, there's like, I don't know, acceptance and commitment. Yeah, something like that. I don't know if that was that. There's also, I mean, there are also ways for, if it's like client or person controlled, not exposing yourself, but maybe kind of like playing with how you interpret the sound a little differently. So kind of listening to something and then just in your mind, just kind of thinking of it as, maybe being another another type of sound as the source or Trying to play with the sound but you were in control like you can leave you're not it's not you're not at the whim of a Therapist who's objecting you to this stuff. So there are ways to kind of like introduce sounds to see if you can kind of Reinterpret them, but this sounds like it was straight up like The way they explained it to me was that exposure therapy works like with a fear of heights. You can stand in a book, then you can stand on a step, then you can stand on two steps, so on and so on. And eventually you can fly in a plane, you're cured. They know that doesn't work with misophonia, obviously. So what they said this is instead, it's teaching coping strategies, but they need to be in that frame of mind to practice coping when it happens. Because... You have to face the fact that a trigger is going to take place. So now what do you do? So they're trying to control the situation and gently, you know, gently. I almost said exposed, gently exposed page to different triggers and then teach her how to cope with it once it happens. That's rational to think that way, yeah. But if you don't have good coping skills, yeah. But it sounds like they didn't really give you any coping skills. It was just like, sit there and concentrate. Try to concentrate was what they were trying to get you to do. Because I remember I could tell her, I said, if Paige could concentrate on the coping skill, she could focus in class and not have to leave. The whole concept is her fight or flight has been triggered. She can't concentrate. So to counteract that, she needs to concentrate? Right, right. That's the part that makes no sense. I think if that person had coping skills to offer, that would be helpful. Let's not talk about her anymore. She's making me angry. But yeah, I'm glad you guys recognized that. Yeah, did you move on? Did you find anybody else after that? I'm getting curious. Yes, I went out to the car that night. And my wife is, I mean, if you ever need anybody to do anything for you or run something, my wife is going to do it. I went out to the car and said, we can't stay here. We can't keep seeing this. They don't really understand it. And I think it was within two weeks, Kelly had had us set up with a... a zoom meeting with the psychologist that we'd, we'd been on a two year wait for. So she somehow finagled that within two weeks. And, and that's been, that was the first time I remember sitting there with my wife and I looked at her and I said, somebody's telling us about misophonia for the first time. We're not informing a doctor. Yeah. That's huge. Um, and so, and how did that, you want to talk about kind of how that, uh,
Paige [23:44]: process has gone are you still um um with this psychologist yeah so we've been seeing each other i think it's probably been like six months and that's going really good and she knows not to do exposures and she's given me so much that to work on and everything and it's going really good so far
Adeel [24:07]: Could I ask where she's based without revealing any names? I'll cut it out because I think I know most of them.
Paige [24:13]: Oh, okay.
Adeel [24:16]: I have no idea then who this person is. Okay, cool. It's in Hinsdale. I'd love to hear what she's helping you with.
Paige [24:28]: We've mainly been working on trying to figure out the difference of what's anxiety, what's OCD, and what's misophonia because I notice all of them together because then I have anxiety about anticipating misophonia, which then triggers the OCD. So we've been working a lot on trying to figure out which is which and how to tell. Which is pretty hard, but I think once I get that, I think it might be a good thing to know.
Adeel [24:57]: That's a really important, interesting approach. And I think important because they get so quickly mixed up or confused, especially the outside world. But I think it's especially important for us to kind of realize that. Interesting. Okay. And then does she have a kind of a plan as to kind of next steps, kind of how it's going to evolve?
Paige [25:27]: I know what we've really just been focusing on right now is just, we just started talking about what the plans are for high school. And we haven't really talked too much about it, but just kind of brought it up at least and talked about what's making me anxious about it and maybe ways I can take breaks. But we don't really, she doesn't have a, I don't think she has a full plan yet. We're just kind of working on high school right now.
Adeel [25:52]: Are you planning to maybe communicate misophonia to the high school? Like potentially?
Paige [25:57]: Yeah.
Adeel [25:58]: Yeah.
Paige [25:59]: I had one or I think it was one or two meetings with my guidance counselor. And then I think it was the vice principal, vice principal.
Adeel [26:08]: Oh, OK. How did that go?
Paige [26:08]: To kind of talk about it. It was good. Dad, I think you and mom were on it, right?
Adeel [26:13]: Yeah. Well, well, Paige did a presentation at the junior high to inform her eighth grade class about misophonia. They did a whole awareness week there. And then it culminated with Paige doing a presentation where she gave a speech to her class and divulged the fact that she had this diagnosis. And the high school heard about it. And at one point had mentioned having Paige come talk to the staff there because they had a student, another student that might have had this. So Paige was really interested in doing that. Yeah, I've been trying to get in touch with my kids' school district counselors, too, to at least make sure that they're aware so that they can be on the lookout. Because I think that'll help a lot of people if schools and administrations are aware. But yeah, I definitely wanted to get to your eighth grade presentation, so I'm glad you brought it up. I think that's amazing. Do you want to talk a little bit about the presentation and how that evolved into the Awareness Week and whatnot?
Paige [27:13]: I remember there was, it was, I'm trying to think it was sometime in like October and I was, we were already working on so much in class and just, it wasn't working with me just leaving. And the teachers weren't even, they were aware, but they weren't as they were at the end of the year. So I remember I called my dad and I was in the office and I was just talking about it. And right when my dad brought it up and he said, like, what would you think about maybe bringing it up or like letting the kids know because none of the people would be coming up to me asking me why I'm leaving. And then I felt like it would even just be easier. And maybe people who cared at all would at least try to do something to help. And then we just started getting in contact with my vice principal.
Adeel [28:06]: dad what did you i don't remember what you talked about mr pearl it was coming it was coming it was getting to a point where it was unmanageable because page was coming home calling us every day three times a week maybe four times a week because she'd be burned out she'd had too many triggers and she just couldn't take it yep and um i her teachers have all the the junior high we could not have been more grateful can't be more grateful than we are for that They all tried to learn as best they can, but it was a learning curve. We only learned from, okay, that didn't work. So we started off giving Paige an index card that when she had a trigger, she could leave the classroom and just put the card down. She didn't have to get up and ask. She didn't have to draw attention to herself. So that way, if the teacher looked around and didn't see Paige, but saw the card, she knew Paige was in the office or outside taking a walk. Oh, that's brilliant. It worked out really good with that. Yeah. Then they were, you know, gum chewing is a big trigger for Paige. And they tried passing a rule in the classroom, no gum chewing, but there's 30 kids in the classroom. You know, every time the teacher turned her back, kids are sneaking it in. And, you know, I can't expect them to be able to monitor 30 kids at the same time. I guess they can't suspend everybody. Right. You know, and they're just kids. You know, I mean, they're just they're just eighth grade kids. They're not trying to do anything. And Paige said it perfectly. Her teachers, unbeknownst to Paige, her teacher said he'd mail me that day because, again, I said, we got to find we got to do something different. Paige can't last like this. She's not going to make the school year if we don't help her. She's not going to last. And her teacher said, we were wondering, would Paige ever consider telling the kids what she has so we can maybe make a plea to them? That's when Paige called me from school and I was talking to her on the phone and I said, what do you think we could do? Do you have any ideas? And Paige, out of nowhere, said, I think I should tell everybody. She said, because right now they think the no gum chewing is just a stupid rule the teachers made. But if I tell them why, it might mean more to them. And that was all Paige. That was all her idea. Yeah. And I said, that's pretty funny because your teacher just sent me an email asking if you'd be up for that. And then Paige said, oh, yeah. Yeah, absolutely. So then it was game on. Yeah, that's where she's like her mom. You tell Paige something's going to happen. It's like the organization of D-Day. Things start happening. Great. They even asked Paige at one point, do you want to speak to the individual classrooms? And Paige said, oh, geez, I don't know. I don't want to do that. Can we just get everybody in the auditorium and do it all at once? Oh, so it was like an assembly kind of situation in the auditorium. Oh, wow. Cool. I don't think Paige has that gene that tells her some people are afraid of public speaking. She has no fear, no hesitation, none. So then what was the... So was the presentation just for this or was it wrapped up in another assembly or something? No, it was just for this.
Paige [31:07]: Oh, wow.
Adeel [31:10]: The principal, the vice principal who handled the 504 was brilliant. What he did, they ran an awareness week. So it was misophonia awareness week. So every day in the morning announcements, they would give facts about misophonia. And this is where Chris Edwards had so quiet. And I started talking. I said, hey, we have this opportunity for an awareness week in our school. But I don't you know, they're asking for facts and posters or something. Chris made us all kinds of stuff, helped out with the facts. And so they did daily announcements where they would give information about misophonia. They would have trivia contests in the lunchroom. They had posters in the hallways. And so that way, by the time Paige gave her speech, they'd already they'd already learned what it was. So then Paige wasn't just saying, I have this thing called misophonia and they don't know what it is. They already learned about it. And then they had like a what was it, like 45 minute speech.
Paige [32:09]: It was our whole P.E. period. So probably like it was like 50 minutes of just the presentation.
Adeel [32:16]: So they played like a seven minute version of the of the documentary. Quiet, please. Oh, yeah. Did you get permission from Jeff to do that? Or would you just play?
Paige [32:28]: I think it was just a trailer. It was just a trailer. Oh, yeah. Yeah. That's great.
Adeel [32:33]: That's great. And they had slides. And then at the end, Paige came up and Paige gave a speech. And I remember one of the things Paige said that really struck home. She said, I don't have the right to tell you not to chew gum. I can't tell you what to do. That's not up to me. But I can tell you if you make that decision, you'll be increasing my quality of life. Right. Yeah. So she left it up to them. Right. Yeah, that's amazing. What was the reaction?
Paige [33:06]: um it was it was pretty different for a while yeah i had people coming up to me just saying that like they loved it or whatever and it was different for i'd say a couple weeks but i mean just with the gum chewing i mean it didn't really it didn't really last too long but right I think it at least did something for the people who did care.
Adeel [33:30]: Yeah.
Paige [33:31]: It plants a seed at least.
Adeel [33:34]: No, I'm just going to say, even if it didn't do anything now, it plants a seed for when they're high school, college adults, I feel like. So, yeah. And I try to use any opportunity I can to tell people about it because that's what Paige wants. You know, Paige has been pretty vocal about it. And I'm, you know, just a real world example. While our daughter's doing this monumental thing, giving this life-changing for her presentation, I'm a visual trigger to Paige, so I couldn't even be in there. I had to stand under the bleachers behind her watching. But that's just a real-world example of what this does to relationships and day-to-day activities. It's not just dad can't chew gum or make a certain sound. It's all-encompassing. right no that's what most people don't understand they think it's like you're that psychologist probably thinks oh it's just a concentration problem that can't possibly affect an entire family or your entire trajectory of your work life career all your relationships um and that's yeah that's an important message that i always try to get across why i do the podcast is yeah it has a lot of effects uh and you know how it's affected your family is that perfect example of that. Actually, speaking of family, what does your sister think? Is she a trigger? What does she think?
Paige [34:59]: Yeah, she's a trigger, but I'd be able to see her eat I feel it's probably the same thing as my friends because I'm able to still be, most of the time, be around my friends eating because it's not as bad because obviously it depends on the person. But I haven't really been willing to risk that. And I think it took her a little bit longer to understand in the beginning. But now she's fully aware and I don't have too many problems with her being a trigger.
Adeel [35:35]: Right. Yeah, it's interesting you said, obviously, it depends on the person. It does depend on the person a lot. It's conundrum why, exactly.
Paige [35:43]: Yeah.
Adeel [35:44]: But honestly, it's kind of unfortunate why sometimes. We don't ask why anymore in this house. Yeah, yeah. No, it's nothing. Well, as long as you know it's not personal, it's something... you know that's that that was hard that was hard for us to handle and and paige would have a lot of guilt about that as i'm sure everybody knows that's that was a big issue and i read something that that changed the way i dealt with it i read something that uh it was a it was the concept that you can affect the other person's reaction you can affect the misophonic reaction by how you handle it So if you, you know, give them a bunch of grief about it, they could have a stronger, more discomfort, you know, discomfort, you know, more pain, more aggravation than if you find a way to say, I'm sorry that happened. I hope, you know, I didn't do anything on purpose. Let's talk when you feel better. Let me know if I can do anything. And that's what we started doing. And I finally told Paige she would feel guilty sometimes, you know, saying mean things. And I told her, of course, you know, listen, just watch me in traffic. Everybody does that. But I said, I told her, I said, Paige, for those five minutes, you weren't talking. Misophonia had the microphone. That wasn't you. I don't think of my daughter as saying that stuff. That wasn't you talking. You're good. You know, didn't bother me in the slightest bit. So the less guilt Paige has, she can recover very, very quickly now. Yeah. There's definitely a cycle, like a cycle of dysregulation. If you, if we see it, any kind of can escalate and obviously it makes everything worse, including the misophonia. So I'm glad you, that's great that you were able to recognize that. And yeah, just try to keep a, keep things calm. Eventually it'll come down. Yeah. I would try to rationalize with her and try to like talk her down and calm her down. And it just made no sense, you know? And I realized you're talking to somebody who can't think straight. What are you doing? So, yeah, I would love to come back to the guilt and shame piece a little bit, but I also wanted to go back to before... uh i know peter is you know your eighth grade going to ninth grade but um you know before covet was there a so like a lot of situations um with folks of misophonia um you know a lot of us have had some kind of um some experience as a child which may have been difficult obviously in this case you know you're one you know happy family um and this is you know divorce and deaths in the family can kind of happen and kind of traumatize a child or a particularly dysregulated parent, alcoholic, or whatnot. I don't want to get too deep into some of this stuff, but I'm just curious if there was... It could be a medical thing. If there was anything maybe during childhood that was maybe different. Let's just put it that way.
Paige [38:46]: No, I...
Adeel [38:47]: not that i know of i mean yeah no yeah yeah and that's that's that's uh that that's i've heard i've heard that before it's just in a lot of cases there is something uh there's definitely a few people or there hasn't really been anything of note uh but yeah it's happened enough that i just like to ask just because other people might um relate um interesting okay and so oh actually so going back yeah going back to I guess advocacy and whatnot yes it's great you reached out to Chris I think he also helped or it's through I think Chris and I'm on the border so quiet that that I found out or was on a Facebook that I found out about the year that I think that Christmas lights at the Thanksgiving stuff do you want to talk a little bit about that About, I'm sorry, about what? Was there like a fundraiser that you guys were doing? Oh, the decorations? Yes, decorations. Yeah, that was, again, was pages. Yeah, yeah, yeah.
Paige [39:44]: Oh, yeah.
Adeel [39:45]: Yeah, I'd love to hear about that because that might give some people ideas.
Paige [39:48]: Mm-hmm. Well, Dad, my dad did... Oh, Halloween, I think it was.
Adeel [39:55]: Yeah, we did it for Halloween and then we did it for Christmas as well. We kept it on for Christmas as well. Yeah.
Paige [40:02]: So he has like a projection show that he does for Halloween and he put at the end... What did it say that you put? I actually don't remember.
Adeel [40:13]: It's a full house video projection. So it's done on computers. I'm not doing a humble brag here. I'm just trying to explain to you that it stands out. It's really, people look at it and wonder, what the hell is that? So we get a lot of traffic. People that can see it from the road will come in. And so Paige said, you know, because I was telling her a lot of people that have these, um houses that get a lot of crowds they'll raise money for charities and she said we should do that for misophonia and so i said okay but just understand you know um if i put a sign outside that says we're raising money for dads who have very bad breath people are going to know i have bad breath i said so if we put a sign outside saying we're raising money for misophonia people are going to know something in this house is misophonia and they said i don't care Um, so part of the, part of the video at the end, I made a video that, um, said, uh, we were raising money for misophonia and it had a little, you know, it was all animated and it had a little thing at the end that Chris had set up. You could text to a number and donate. And then, um, for Christmas we put up, we did the same thing for Christmas. And then around Christmas time, we put up a, uh, Santa North pole mailbox that people could put cash donations in. Oh, very cool. we plan on doing that again this year yeah yeah yeah that sounds like a great idea um were you able to um obviously you were able to get some money but uh i'm curious were you able to to find people who are like, oh, we're able to kind of like educate people who may not have known that they had. Every time it comes up, whether we're talking about, you know, because on Facebook is a lot where we talk about things. If we post about Paige doing her assembly or if we post about Paige doing the awareness week or if we mention the decorations, Chris has called me the misophonia magnet because somebody will come out of the woodwork and say, oh my gosh, I think I have this. and that was that was the most and paige and i've talked about this a lot that was the most impactful thing to me besides my daughter having this was the first thing i did was i went online and i found a facebook group about it and i said as parents what can you know if you have this as parents tell us what can we do to not make it worse because that was my fear was that you know is there anything like if you could look back and go gee i wish my parents hadn't done blah blah blah or i wish they had done blah blah blah and i got i mean a hundred different responses people sending me messages and one was an older woman in her 70s she said um the best thing you can do is what you're doing trying to educate yourself and just believing in your daughter she said she hadn't spoken to her family in about 30 years Because when she was a kid, they told her she was overreacting. She was melodramatic. She was rude. And she lost contact with them for, I think she said, 30 years until she read the article in the New York Times. And she said that was the first time she heard about misophonia. And she was able to call her family and say, look, I have a thing. This is what I have. This is what it's all been about. And she was able to speak to her family again after 30 years. And that just that floored me that somebody's life could change that dramatically by increasing your vocabulary by one word. Yeah, that's amazing. And and Paige has always from day one, Paige has talked about. Sorry, sorry. Paige and I were in a doctor appointment, and it wasn't even for misophonia. It was, you know, I'm a dad. I don't know where the hell I go. I just go where my wife points. It was a dental appointment or a leg. I don't know where we were. But we were sitting in the waiting room, and I couldn't even sit next to Paige. I was about a chair away, and we were talking. And at this time, we hadn't even found a doctor for Paige yet. We hadn't found her help for misophonia. And I had an old high school friend who has grown up to be a brilliant woman. She's a she's a neuroscientist. And I contacted her right away and asked her if she had any information. And she's been helpful to, like, help guide us through, you know, oh, no, that's a sham. That won't work. Don't waste your time. Yeah. And I was telling Paige to give her some confidence. I said, Paige, just, you know, I said, this friend of mine, she's brilliant. She's one of the smartest women probably in the world. And she's on your team. She's going to be helping us through this. We'll get through it. And Paige said, oh, I'd like to do that. She's like, I think I'd be good at that. She's like, because then when I get older, if I learn the science stuff like that, I can help people because I have it. And I'll be able to understand exactly what they're dealing with. And it struck me that we hadn't even found her help yet. And she was already thinking about helping other people. Yeah, and that's very powerful. Actually, I was going to get to, that speaks to the high, high empathy that misophonia kind of gives a lot of misophones, it seems like a lot of misophones talk about. And I think that's one of our positive superpowers is... maybe a little bit extra empathy, which I think everyone should have, but we definitely kind of seem to have, a lot of us seem to have in spades. So that's great, Paige, that you're wanting to do that. Yeah, because I was going to ask, you know, you're going into high school, but have you thought about, you know, career arcs and kind of what you like to do? You don't have to have obviously anything specific. You're still young. You should kind of have your doors open as much as possible, but it sounds like you're already thinking a little bit about... studying more the science of misophonia.
Paige [45:53]: I definitely, like at first I was kind of thinking about what if I was just like a doctor or a therapist who talks to people, but I would rather, I want to be able to do something and maybe talk to more people and not just have clients, maybe get the word out more than I would like in an office. I don't really know.
Adeel [46:15]: I think you could probably do both. I mean, once you're, once you're an adult, you hopefully have more resources financially to, yeah, to have, you know, to spin up other projects and get other people to help you, you know, help you do that. It sounds like your moms are very good at getting things done too. I'm sure you'll, you'll probably get that trade. You're getting that trade as well. But yeah, I mean, I wouldn't limit yourself. I think there's probably a lot of different ways you can, you can help out.
Paige [46:39]: Yeah. I just don't know for sure what really what, I just know I want to do something to get it out.
Adeel [46:48]: Yeah, no, that's great. And, uh, yeah, we will definitely, we'll, yeah, the Miss Funny World will, will appreciate anything and everything. Um, I guess, um, yeah, maybe day to day, like when you're going out in, in the world, I guess, uh, maybe coping coping like yeah coping methods like this summer like what are you doing when you go out uh out into the world are you are kind of earbuds noise cancelling stuff kind of your go-to um or is it just people at large yeah all my friends know yeah um so if there is a problem they know if i need to take a break or something or sit somewhere else so usually i'm good about
Paige [47:30]: they'll like let me pick where I want to sit if we go somewhere or ask if things are okay. So usually I don't really have problems. And most of the time during summer, I'm just with my friends most of the time. So it hasn't been, I haven't really noticed too many problems. And then if we, if there is someone chewing gum or something, there's times where I'll switch spots with someone so I can be further away or just leave.
Adeel [47:54]: Or you can stare them down like you did the one kid. The glare. Yeah, yeah, yeah.
Paige [47:58]: Yeah.
Adeel [48:01]: Um, movie theaters and stuff. Um, probably a voice. We figured that out. Yeah. So we, we, that was one of the things like, you know, Oh, we used to go to movies and I thought, you know, in the beginning of this, you know, you, you, you, you mourn the things that aren't going to happen anymore. I found myself going down that road, you know? Oh my gosh. I'll never, you know, I'll never be sitting next to my daughter in a movie theater again. We're not going to share popcorn. You know, we're not going to be doing this or doing that. And I realized, uh, That's just stupid. You know, there's a lot of people in the world that have a lot worse going on and they make their lives work. You know, if the worst thing I have to do in my life is eat 10 feet to the left of my kid, I'm doing okay. So when Paige asked me on her own, hey, would you want to go see a movie this, you know, tomorrow or something? You know, you can prepay tickets. You know, you book your seats. So I bought a seat for Paige. I bought the two or three seats in between us.
Paige [48:58]: Oh, I forgot about that, yeah.
Adeel [49:00]: You know, so I bought like four or five extra seats. So we had a blocked out area. And then we get the hearing impaired headset. So Paige can put that on. And she hears the audio. She can wear her own headphones. and just plug into the wireless thing so she hears it in the headphones and doesn't have to hear anybody else around her. Yeah. I've tried those headphones in a theater once. It sounded kind of odd to me, but maybe I had a bad one. You might have had a bad one because the one she had was shocking. It was indistinguishable. There was no delay. You could sit there and take it on and off your ear and you couldn't tell. Paige and I had a conversation around Thanksgiving. Our entire extended family knows, and they've just been phenomenal. And we had Thanksgiving at my parents' house with cousins, aunts, nephews. And anytime we go somewhere, we always have an escape plan. Paige, just let me know when you're ready to go. So we drive separately. And we left on Thanksgiving and Paige and I had a conversation in the car. And when I mentioned it online, people had a pretty strong reaction to it. And Paige, you remember what you had said when we left? You know what I'm talking about?
Paige [50:15]: That like my main goal wasn't, wasn't to be.
Adeel [50:17]: Yeah. You said you felt better when you heard me, you know, when you heard your mom and I talked to the doctors about that.
Paige [50:25]: Oh, I mean, yeah.
Adeel [50:27]: Yeah. She said when we got in the car, she, Oh, go ahead.
Paige [50:32]: No, I remember. Yeah, I remember saying that. I remember the work that we were doing with my doctors was all focused around being at the dinner table, being around people eating and being able to go back to that normal. But that wasn't that's when I kind of realized that was never that's not my main goal in the work that we were doing. It just didn't feel right. like necessary to want to go back to the table. Cause even if I did, I knew I was going to be stressed. I knew it was never going to be the same. And there's so many like other ways I can still be involved. And I just think that that's kind of what I realized.
Adeel [51:12]: And I didn't know Paige was thinking that, you know, I was thinking that, and it meant a lot when Paige said that in the car that she said it. Because I think that might help other parents if they know they're, you know, because a lot of the therapists were trying to say that was our goal. The goal is get Paige back to the dinner table. And I finally said, that's not our goal. That's not going to be a goal. Because at best, she'll white knuckle it for me and my wife. She'll do it to make us happy. She's never going to be happy or calm or relaxing or relaxed at the dinner table. That's just not going to happen right now. So why would we force her to do that? It makes no sense to me. And I said, it's it's just a habit. Right. And what I finally explained to my what I explained was, OK, so you're saying, well, it's a tradition. It's it's you know, it's a family thing. It's a bonding moment. I said, OK, well, the biggest family dinner of the year is Thanksgiving. That's the one everybody's got to have the family together. That's the big one. Everybody's got to be together on Thanksgiving. If it's so important, why does half the country have their children at a kids table? I grew up eating at a kid's table. I ate separately from my parents on Thanksgiving, and it didn't phase me. So if my daughter's got to eat at a separate table, who cares? Yep. All these things should be questioned. And yeah, as we've established, that psychologist has no idea what they're talking about or is just kind of like so focused on just can't think outside of the box. Yeah, you're right. There is no reason why you can't bond without, you know, sitting around this one piece of wood on, you know. Right. I have to consume protein within a 10 square foot circle of my child to make my life complete. I don't think so. going to a movie theater. You know, that was the big thing when Paige and I went, it was just the two of us. She said, yeah, but you're not going to be able to eat anything. And, you know, I'm not exactly petite. So I said, Paige, do you think I'm going to miss it? You know, I watched a movie last night at home. I didn't make a 50 gallon bag of popcorn and suck down a two liter of pop. I'm capable of watching an hour and a half of entertainment without consuming 6,000 calories. I can make this happen. It's just, it's a habit. It's just something you associate with it. So when I go to the theater, I just don't get anything. You know, even if I'm behind her because I don't want her to have that stress that she might look over and see something. You know, it's not that big of a deal. Actually, yeah, Paige, it sounds like mesokinesia, the visual triggers are a big deal with you as well. Did that come around the same time? Did it come on a bit later?
Paige [53:44]: Um, I think it was around the same time because I, I, because I remember the same things I would be hearing with my mom when it first started, the way she would eat. I remember we were at the table and it always makes fun of her having something in the corner of her mouth. And that would, even that would bother me. I remember that. Now the whole world knows.
Adeel [54:08]: Well, we said early on we were going to make this very nonchalant with misophonia. My wife and I had a conversation about that. We said it's not going to be, oh, Paige has misophonia. It's going to be, eh, Paige has misophonia. Yep. You know, I told her it's no different than a cat allergy. You know, if you walked into a room where a bunch of people were petting cats and you said, oh, I'm allergic to cats, they would instantly put the cats away and nobody would think twice about it. So if you walk into a room and say, I have misophonia, people should understand what that is someday when they learn about it. And you have no reason to feel any different.
Paige [54:42]: I think it feels so like isolating because no one does know what it is.
Adeel [54:47]: Yeah, we're in those early days right now. And that's great what you said, Mike. I mean, yeah, like de-shaming it, like, is huge. Apart from, it goes to something you said earlier about just feeling guilty about it. People feel guilty about it because, well, initially nobody else knows about it. So we just immediately... blame ourselves. But if you take it to the next level, once people are educated, if you can treat it nonchalantly, it is what it is and we're trying to do the best we can. That helps misophones a lot because it reduces that feeling of feeling threatened, which is what ignites the fight or flight. So I think that's a great approach. You know, there was a time where she was worried about telling friends about it, you know, and I said, you had no problem telling them when you hurt your ankle or if you had the flu or if you had a headache. It's a physical ailment. It's no different than an allergy. It's an involuntary physical response to stimuli, period. No different than a cat rubbing on you and getting hives. Right. Right. Well, um, yeah, no, that's, that's very true. Um, yeah, we're coming, we're coming up to, we're coming up to an hour. Um, uh, no, no, this, like I said, it's, it's totally, um, uh, it's, it's, we just kind of go with the flow, but yeah, I did want to, I don't know. Yeah. I wanted to give you, give you all a chance, um, since you've thought about this a lot and are great advocates, um, Anything else you want to kind of share with people, parents, maybe families especially, because I don't get the opportunity to talk to as many families about so many different dimensions of misophonia. Is there anything that you'd like to share? Maybe we'll start with Michael or Kelly. I don't want to put you on the spot, but if you'd like to say something, that's great. But maybe starting with Michael and then we'll end with Paige. When we first found out about it, I started kind of obsessing about reading about it and learning about it, trying to educate myself. And it became very depressing for me because I was reading articles that were written 10, 15. One of the first articles I found was seven terrifying things to learn about misophonia. Probably not the best way to start. That's part of our modern sensationalist world. You'll see a lot of that. And it really had me... scared to death for Paige's future and what life's going to be. And I finally had to just change my mindset that it's not that big of a deal. You know, Paige is dealing with it every day. All I got to do is, you know, support her. And, you know, my wife, you know, and I talk about this constantly. It doesn't matter what we feel. It doesn't matter what we think. it's pages reality. It's, it's, I don't have to understand it. I don't have to know how it works. We just go by what page sets. So if page says X, Y, Z isn't working, we don't do X, Y, Z. And, um, it was hard to like mourn. not having dinners at the table at first. It's hard for me to like get in that mindset now because for a while there was really sad about we'll never have dinners. We'll never, you know, sit side by side in a movie theater. And then I just realized that's so, that's silly. It's just silly. There are people out there with much greater expectations know impacts on their lives and they're living just fine they're they're doing wonderful things and they get along just fine this is just it it's it's a transition it's just an adjustment for us you know and so pages besides the misophonia page is healthy happy she has friends we can talk to her she's she's funny so i can't eat within 10 feet of her okay I'm good with that. That's your normal. And so, yeah, you just kind of work around it. You know, it's just, you know, it just is. It just is what it is. My dad has always taught me that since I was a kid. It is what it is. You can't worry about how you got somewhere or why you got somewhere except the fact you're here now and deal with it moving forward. Right. Without exposure therapy. Exactly. Kelly, did you want to add anything?
Paige [59:12]: You know, when this all first started, you know, since we really didn't know what was going on, we didn't know if it was, you know, Paige is just hormonal and God, is she in a mood? And, you know, so we didn't know if it was more of like a, not discipline, but, you know, more so just like her mood. Knowing what we know now and learning everything, Um, people often ask, you know, how speed's doing, you know, is she better? I said, well, she's always going to have this. There's, there's no cure yet. So we have learned to accommodate and adapt, you know, so, so our life is better now, but I think, um, a big takeaway, um, something that Mike had mentioned to help me understand where, um, Six months ago or a year ago, I would try to rationalize and put logic into my responses, and I would banter back and forth with Paige, forgetting that she is not rational at that time. But in my head, I'm thinking, well, how does she not understand this? Where knowing now what we know, we are able to separate. Okay, that's misophonic Paige, and there's normal Paige. So when she's in a trigger state of mind, I just completely shut down, ignore her, stop talking, don't engage in any way. She gets over it so much quicker. Whereas before, we would go back and forth and it would make it so much worse. So being able to kind of break it down and just know that if I don't engage, if I don't let this bother me, it's going to be much better in the end.
Adeel [60:57]: that is a hugely important takeaway. Uh, and I think that applies to more than dismissive when you're a parent. Uh, yeah. Some things are not rational. Some things are purely, uh, instantaneously emotional, maybe rooted into some other process in the body that, that we don't understand yet. So if you can just kind of not escalate and go through that cycle of that spiral, um, things can, things can work out. Yeah. That's huge. Thanks. Um, And finally, Paige, any last thoughts you want to share with people?
Paige [61:33]: I think just not feeling guilty for either how you react or what goes on when you are triggered. So I think that's pretty important.
Adeel [61:47]: No, that's key. A lot of people come on and talk about the guilt and the shame. And for a lot of people, it goes on for decades. Like that woman who's 70 now, I've had other people come on. So yeah, that's an important lesson to try to... Maybe connect with other people who have it or find a way to get over that. Try to not just get over, but just try to focus on that guilt and shame and be aware of it and try to keep that under control. Yeah, well, thanks to our family, Michael, Kelly, and Paige. Thanks for coming on. I was excited to talk. And thanks for everything you do in the community. Doing the podcast, I know how much advocacy helps. And so it's great to hear that people are responding to what you do. Yeah, we're actually in the middle of Misophonia Awareness Month here in our town. Oh, yes. Great. Oh, what town are you in? Manhattan, Illinois. Manhattan, Illinois. Okay, yeah, I thought you were in Illinois. Cool, cool. Our mayor heard about Paige and contacted me and said he'd like to set that up. Oh, yes. Okay. That's amazing. This is how it starts. And then soon Paige will be president and we'll have this pointy under control for the entire country. And I'll have to move to Canada. Yeah. Right. All right. Well, thanks again, everyone.
Paige [63:10]: Thank you. Thank you.
Adeel [63:12]: Thank you again, Hesser family. I'm excited for more advocacy projects that I hope will inspire others around the country. Also, I wish Paige the best as high school gets started. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at misophoniapodcast.com or go to the website, misophoniapodcast.com. It's usually easiest just to send a message on Instagram or Facebook. at Misophonia Podcast. On Twitter or X, it is Misophonia Show. Support the show by visiting Patreon at patreon.com slash Misophonia Podcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [64:16]: Thank you.