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Adeel [0:01]: Welcome to the Misfonia podcast. This is episode 25. My name is Adeel Ahmad and I have Misfonia. This is actually the first episode of what I'm calling season two. The last episode you heard was actually recorded back in December and I'm recording a whole new batch of episodes. Coincidentally, all these episodes are recorded in this new post-COVID age of the coronavirus. So you'll probably be hearing kind of insights related to that. And some folks have actually wanted to come back and talk about how they're dealing with misophonia in shelter. So this episode is actually with somebody quite physically close to me, my next door neighbor, actually. I know I've interviewed folks from all over the place, the UK, Panama, but this is actually my next door neighbor. I've only lived in this in Minnesota for a few years. And just coincidentally, my next door neighbor happens to have misophonia as well. So I'm happy to bring that conversation today. He's a pastor here in St. Paul and actually developed, as you'll hear, his misophonia later in life, not growing up. But interestingly enough, all his siblings also have misophonia. So we get to hear about all that. Again, if you want to email me, hello at misophonia. Hello at MrFunnyPodcast.com. May is going to be filled with recordings of new episodes, and I'm really looking forward to that. I think all the slots are pretty much booked, but you can go to the website and see if there are slots available. Please let me know what you think and how you're doing under Shelter in Place, wherever you are. On social media, you can find us on Instagram or Facebook at Misophonia Podcast and on Twitter at Misophonia Show. If you go to our social media accounts, actually, you'll find some information about the Baylor School of Medicine is doing a new study on misophonia. And they're looking for participants who will be compensated with $150 at the end of the study. So that's kind of interesting and will definitely help research. All right. So for now, let's listen to the first episode of season two, my interview with John. Welcome, John. Glad to have you here.
John [2:38]: Thank you, Adeel. I really appreciate the opportunity to connect and share a little bit of my MISO story.
Adeel [2:47]: Tell me. So I guess the audience knows that we are quite closely connected, especially geographically. Yeah. I think we're both probably, what, 30 feet off the ground and about 20 feet away from each other right now.
John [3:05]: Yeah, when you live in a city, that's about all the space they gave us between our houses. So that sounds about right.
Adeel [3:15]: Cool, cool. Yes, we're here in Minnesota. So, yeah, so I usually also find out, like, what do you do for a living and kind of a little bit about you there.
John [3:25]: Yeah, so I live in St. Paul. I am a Lutheran pastor, and I work at a church here in St. Paul, a little different neighborhood than where I live. I'm on the east side of St. Paul, so the east side of downtown. serve a congregation that has been around for over 130 years and positioned kind of right in the heart of the city and has been a neighborhood congregation and community for quite a while. Been a Lutheran pastor for a little over 10 years and this is the church that I'm working at now.
Adeel [4:06]: Nice. So did you go to school for that or was that something that you, I don't know, did you have to train for that? I don't know much. I'm kind of ignorant here. I'm going to slowly get to your school kind of experience with me.
John [4:25]: Yeah. So I went to Luther College, which is in northeastern Iowa, after graduating from high school. And then after I graduated, I moved back to the Twin Cities. I have a degree in elementary education. But after I finished student teaching, I started working in a Lutheran church. different than the church i am now i was working primarily with middle school and high school students in that context and while i was while i had that position uh decided to go to seminary so every every religion and different denominations within the religions kind of manage and handle that a little differently For those of us that are Lutheran, we go to grad school. One of the years of grad school is spent on internship where you have a chance to go into a congregation and kind of practice some of the things that we've been learning in the classroom and then go back for your final year. And then at that point, you're ready to find a congregation to get connected with. So yeah, it was four years of grad school. And like my buddy reminds me that...
Adeel [5:38]: he uh often asked so you went to grad school for four years so you can work every weekend of your life and then well yeah i guess so that's interesting so you i didn't yet only if you had that the educational background as well so um so yeah because i mean school like schools and churches are often uh you know thought of as not the best places for misophonia so i'm curious uh what like I don't even know where to start there. Maybe let's start with like... Well, you know what? We'll get to that. Maybe let's just go back even further.
John [6:13]: Yeah. And actually, the... As I've been talking with you, Adeel, and others about misophonia, I've really been trying to identify when I can remember the reactions that I have to the things that trigger for me in misophonia. And actually, it's when I was in grad school to become a pastor. I mean, I could bring you to the spot in the classroom. It was January 2003, and I was sitting in a lecture, and there was a person sitting behind me eating a snack. And I just remember having this internal reaction because I was triggered by that sound. Like that's kind of my point of like, holy cow, where did that strong reaction come from? And what was that about? And because I've gone back, like I have a brother and sister and lived with my parents growing up and I cannot... remember any uh any triggers or strong reactions when i was a kid college was you know pretty smooth sailing like you said ideal those classroom spaces or even having to live in dorms and in close quarters with others for those who uh have have acknowledged the misophonia triggers at that point that really wasn't uh an issue that i had to work through and so it wasn't really until i was I was in my early to mid 20s a couple years after graduating from college and in grad school where I can remember for the first time that just being triggered in that lecture. um yeah i i mean i want to say so i i took a it was in january so i was taking a a j term class we had one class for uh just for the month of january and i want to say it was like a tuesday um and yeah he uh the the student behind me who eventually became a friend of mine um as a lot of us know we're can be triggered by those that we call friends or family. He was eating a bag of Cheetos and in the quiet space and setting that triggered my reaction. And then I think there are then other indications and times after that, that I realized, all right, something's going on.
Adeel [9:32]: Did you know him before that moment?
John [9:35]: So when I was taking that class in January, I was still working full time and was just a part time student. Eventually, I would quit my job and become a full time student. And so Brian was his name. And I mean, I knew of Brian, but hadn't gotten to know him or became friends until it would have been that next fall when I was on campus a lot more and had an opportunity to build relationships with some of the students that I was attending classes with.
Adeel [10:10]: You didn't know him for a while or had any bad experiences with him beforehand?
John [10:14]: Yeah, no.
Adeel [10:15]: Kind of random. Interesting. Do you remember anything particularly stressful? Obviously stress is one of the constants that kind of like really brings this out. I'm just curious around that time you obviously were, you know, out of college and grad school, if there were any new, new stressors that, that may have kind of.
John [10:37]: No, not.
Adeel [10:37]: Yeah.
John [10:38]: And I mean, what would have been interesting is I took a I had to take a foreign language. We were required to take Greek as one of the two foreign languages while we were there. And that was five days a week, eight in the morning. And that was for the fall semester. This class that I took for for J term. It was really kind of chill. It was I think it was a three hour lecture. So the professor would lecture for 50 minutes. We take a 10 minute break and do that a couple more times. So it was like a pretty chill, relaxing, relaxing time. And, you know, even like leading up to that, I mean, I. I was dating Jenny at the time, who's now my wife, and that relationship had really just kind of blossomed over Christmas that year. You know, work was going pretty well.
Adeel [11:39]: Everything was going great. Yeah, yeah.
John [11:43]: All of a sudden, misophonia creeps in. That bugger. Yeah, no kidding. And I certainly am willing to, you know, I know my memory well enough that... Maybe there are moments before that, but that's the, you know, when I think about misophonia, when I really started to pay attention and acknowledge it as something that would be, would cause in me emotional reactions, it was, yeah, it was in that classroom in January of 2003.
Adeel [12:18]: So then, so, okay, started with that, the gabi hand with a bag of Cheetos. Did it, how quickly did it start to kind of snowball? Like, was it just, it was just kind of those kind of eating sounds that were bugging you once in a while? Or did it really, did it start to accelerate and add more people and more sounds?
John [12:39]: Yeah, it's, so my misophonia for me is very isolated to, Just that sound when somebody near me is somebody near me is eating something that is crunchy. So for and, you know, listening to other conversations, you've had a deal. And even in conversations with you, I've come to learn and recognize misophony is a pretty broad category and people have. you know, many triggers that cause day-to-day interactions really difficult. For me, and it hasn't, I mean, from up until, you know, this time in 2020, I have not been, I haven't added to the list of triggers for me. It's still very, very isolated to just when there isn't other sound around, uh somebody eating something crunchy and it's not it's not because they're not eating it correctly it's the hearing that sound gives you that fight or flight what do you feel uh yeah it's similar um yeah i i it's it's fight okay it's like no fight yeah yeah no it's um and
Adeel [14:11]: Does it come out as cringe or come out as somebody's on the floor in five seconds?
John [14:18]: Right, yeah. So I'm happy to say I haven't put anybody on the floor yet. A few holes in the wall, but nobody else. I really like baseball, and I remember we were at a baseball game, and there was a woman behind me that was eating a bucket of popcorn. And for some reason, like all I could hear with all the other noises going on was her eating that bucket of popcorn. And according to my wife, I turned around and gave her the dirtiest look.
Adeel [14:58]: Oh, yeah. Yeah, we know about the glare.
John [15:01]: Yeah, right. So it's the glare. I have three children of my own and live with Jenny, my wife. So most of my triggers are brought on by them. It's I will. So the weird thing is, is I can if I can replicate the sound or that that's usually enough for me. So if somebody is eating a bowl of cereal and I, too, am eating a bowl of cereal, that's enough. But to have to listen to all and I should throw my dog in there, too, when when my dog is. Eating her dog food.
Adeel [15:47]: Oh, Lula's eating dog food also triggers you too. Is it crunchy or is it this?
John [15:53]: No, it's the crunch. It's her crunching the dry dog food. Yeah, so it's, you know, and my family has learned my reactions and it's often a look or a glare that happens so quickly and I don't even mean to do it. You know, which is pretty common. And then they also, so they know when I've been triggered, they also will point out to Maddie, my oldest, will point out, when you know in the morning if they're eating breakfast and i'm not going to eat at that time or i i had already eaten i'll remove myself from from the kitchen and then you know one of the kids will say oh where's dad well he can't handle being in here listening to us eat um so that that also induces a bit of a a reaction of the like having somebody name it out loud that, um, they know they're doing something, uh, to trigger me. And, you know, I, I feel like, like, Hey, I'm taking the right steps and removing myself from the situation. And they, by no means is it, is it done intentionally? Um, but you know, that's, that's been their reaction to it.
Adeel [17:24]: Okay. So, uh, okay. Yeah. So it's limited, limited to that sound. And, uh, yeah. Cause when you said, um, you love baseball i had a different visual but i'm glad it's not what i had in mind that's that's interesting so uh and so one one other thing that you i know you've told me is that you're um you know you so it seems like you didn't have any history growing up but it's it's it's true that your uh siblings are also exhibiting misophonia as well i'm curious um yeah if that's true and like how do you how you uh how they develop theirs
John [18:00]: You know, that, yeah, so I have, I'm the oldest of three. I've got a brother that's about two years younger than me and then a sister a few years younger than my brother. And all three of us with, again, isolated with the same trigger experience the fight reaction to that trigger sound. And, you know, interestingly enough, we haven't like we all three of us have acknowledged that we have misophonia. And because I can remember this was probably five, six years ago, reading an article for the first time where misophonia was just named out loud. Yeah. And, you know, that aha moment, like, holy cow, I'm not totally crazy. This is actually a real thing. And I sent it to my brother and sister. And so, you know, it's kind of sad at that level where we've talked about, you know, what our triggers are. But I have not taken time to... to kind of hear their story and in the history or, or, you know, how far back they can recall. Um, because, you know, in addition to my immediate family, uh, the interesting thing is, is that, uh, my dad, my mom, uh, since died, but my dad and my siblings are the other, I mean, I can, I can be triggered obviously by random guy eating bag of Cheetos. Um, but, uh, you know, the much, it induces a much stronger reaction, uh, from my family.
Adeel [19:44]: Got it. Okay. Including your, uh, and so, so you, you gave the article to your, to your siblings. So you, but you hadn't, you hadn't talked about it. It was just kind of like, it's somehow acknowledged that you guys had it sometime in the last 20 years.
John [19:59]: yeah yep that all three of us had yeah had this and and again up until we had the name misophonia and had somebody start to identify some of that up until that point it was just this commonality commonality between the three of us around this idea that Yeah, we just get super angry when people are just doing normal things like eating food.
Adeel [20:26]: Okay, so that's how you talked about it amongst each other. Like, yeah, I get super angry about this. And your siblings like, oh, me too. And yeah, and yeah, just over and over in the pattern, you start to see the pattern. Then once you saw the name in an article, you passed it along. passed it along that's correct so did um so growing up you didn't have it growing up i'm just curious if all of you have it now did maybe do you remember any parents or family members having it while you guys maybe didn't have it but just maybe noticing it in you know other family members or i i cannot recall okay
John [21:05]: Anybody knowing of anybody having any reaction. My extended family is pretty close. Both sets of grandparents and aunts and uncles and cousins. I'm not aware of anybody else in our family system. And then even narrowing it down to my parents, I don't recall them displaying any sorts of indication of misophonia. And, you know, we... again, had talked about it with my parents and neither of them acknowledged of like, oh yeah, me too. It was pretty isolated to my brother and sister and me, which, you know, kind of fascinating to figure out what that's about and what triggered that in each of us. You know, what's the result of that?
Adeel [22:01]: That's really interesting. So you have brought it up with your parents, right? Mm-hmm. Okay. That's kind of interesting because I guess, I mean, in a lot of situations, it's kind of hard to bring it up with parents because it caused a lot of problems growing up. But I guess for you guys, it was fortunately a little bit easier probably. Did you know if they, when you, when you told them, when you told your parents that they, they didn't say, oh yeah, we remember when you, you know, slap this one.
John [22:30]: Yeah. Right. No.
Adeel [22:32]: It was news for them too.
John [22:34]: right yep it was it was news for them and and again you know and understandably so i i don't blame anybody else but the you know their reaction has been how others have been of like you're kind of weird just get over it yeah um then you know maybe a little bit more sympathetic than than that but yeah not oh i can remember when you were 10 and you know uh, this incident happened or, or that incident. I, I mean, there's been a couple of times and this, this is, you know, dating back the last 15, 20 years, but, uh, like my brother getting so angry or so triggered, uh, where he actually would like slam the table. Um, but, but that, you know, he would have been, yeah. At that family dinner. Uh, he would have been though in his twenties at that point. And so, um, Our conversation has got me thinking I should, well, check in with my brother and sister, what they recall from their childhood. And then also my dad to see, to see what he can recall.
Adeel [23:47]: That'd be an interesting kind of a family podcast episode in the future.
John [23:53]: You let us know a deal.
Adeel [23:55]: So then, okay, so you've, yeah, you just found out recently. So I guess, so then that brings us maybe a kind of, kind of talked about how it, how your family triggers. Let's go to your, maybe the circle back to kind of workplaces. Mm-hmm. So where you are now, you're obviously working at least Sundays with a big congregation. You're meeting a lot of people every week. What is... And, you know, people come with all kinds of health, whatever health states and their coughing and their blood, you know, whatever. yeah what's it like you like you have to you know you're a big representative at a at a church and you have people what is that what is that like how do you how do you deal with that
John [24:47]: And again, I think, you know, fortunate for me, it's not been, it's not been difficult.
Adeel [24:56]: Yeah, because you have that isolated, unless you come in with a bag of chips. Right, yeah.
John [25:02]: Like if you come and sit down, you know, we sit down to have a conversation and you bring a bag of chips and an apple and then some carrots.
Adeel [25:11]: Okay, that's why that giant no chips bag was outside the window.
John [25:16]: We've got it plastered all over. Some schools have no peanuts because of allergies. We have no crunchy things because of pasta.
Adeel [25:25]: Guns are banned on some premises.
John [25:27]: Chips are banned. Exactly. So at work, when I think about misophonia at work, it's often just when I am having lunch with my coworkers. I work with a pretty small team and we fit around one round table and you can imagine people are bringing pretty normal things to lunch. And so there are times where, When I think about the workplace and when I have a difficult time there, it's more of the small group settings or a lunch has been served and you know, along with sandwiches or chips or other things that, you know, I can recall some moments where that's been difficult. But fortunately, again, because it's so isolated to just one trigger, you know, kind of my day-to-day operations and my role there, I'm not having to, I'm not having to navigate those situations very often.
Adeel [26:46]: So do they, do your, your coworkers know about the condition?
John [26:51]: Yeah, no, I, I haven't, uh, I have not told them, um, which, which, and, and I, I, I've thought about, you know, why haven't I shared? And I, I think part of, why i haven't is still you know i go back to some of the initial conversations i had with if it were my parents or other loved ones that had that reaction like that's really weird what's wrong with you um and so my coping has been more of like this is for me to figure out and i need to I need to just kind of get over it. I mean, it's been recommended to me. Maybe you could get hypnosis or, you know, maybe there are other things, you know, like like a sprained ankle. You just do a little bit of rehab and then it's going to go away. And and maybe some of that some of that is there. But, you know, internally, it feels much more than just a sprained ankle. That's some physical therapy. would take care of. But I think because, you know, I've kind of tricked my own mind of like, oh, that's just your thing to deal with. So my little mantra is they're not going to eat forever. They're not going to eat forever. They're not going to eat forever. And you just kind of, I just, I suffer through that lunch interaction.
Adeel [28:22]: Yeah, that has come up a lot for certain situations. It's like if you know, if you can just repeat to yourself that there's a time box and something's going to end by a certain time, that kind of helps diffuse the fight or flight.
John [28:40]: Yep.
Adeel [28:40]: But if it's like open-ended, then it's... Maybe that's why I could never stand... lunches with coworkers because sometimes it was just so open-ended and I didn't know what they were going to, you know, pick to eat.
John [28:54]: Yeah.
Adeel [28:55]: But yeah, if you can kind of time box it a little bit, it kind of helps. That's interesting.
John [29:00]: Yeah. And that, you know, that's been, it's been enough. I, I'm fortunate enough to, I have an office that I work in, so I don't have to share workspace and really it's, well, it's, uh, not right now, we're all, uh, working from our homes, but, um, it, it, other than the, you know, that hour a day when we sit down to have lunch together, um, it, you know, that's, uh, work at, fortunately at work, it's not been, uh, too incredibly difficult.
Adeel [29:36]: So, yeah, that brings me, uh, I mean, that reminds me, this is the, um, the last episode that I recorded was recorded, uh, in early December 2019. So this is the first episode of the COVID era. So yeah, it would be worth spending a few minutes on that. So you're working from, I'm always working from home as my esteemed audience knows, but you're working from home, which is a stark contrast to your main... to how your job normally works. Um, how has that affected you? And let's, let's leave it. Let's stay, let's keep it scoped down to how it affects me. So, so, um, it's, you know, you, you're going from an environment where you're not, you, you really just have to worry about that lunchtime, your time boxed it. Um, and you haven't told people now you are at home. Yeah. You got loved ones who can be eating all the time and they they do know about it. So. Yeah. And you can't get out of your house. Obviously, you're trapped. We're all trapped. So has it been better or worse? I've heard some people want to come back on the podcast to talk about how much better it is, but they probably don't have the kind of jobs that you have. I mean, yeah, very different kind of situation. So sure. You know, in a few words, how it's been.
John [31:05]: Yeah, so yeah, I am at home and working from home, which means I have all three meals a day and any snack time that my children have throughout the day. um spending a lot of time with those who trigger me the most and so yeah it's been it's been a bit more difficult uh as we are spending time in our homes and um but again like you know like i just talked about with my co-workers i it can often get myself to the i like that language the time box okay i know this time is going to come to an end i also will say i know they're not doing this on purpose my one of my first reactions is that like why would you do this to me um right and so i i you know i've learned to to do some self-talk of they're not doing this on purpose this time is going to come to an end and So it's been a bit more of a challenge just because I'm around those who trigger me the most, which is my family. And we see a lot of one another.
Adeel [32:26]: Got it. Yeah, that makes total sense. Yeah, everyone's experience here has been different. Some people are, yeah, some people are digging it, but others, it's more challenging. It's interesting to get that perspective. So going back to, you know, how you've kind of, you said you've kind of tricked yourself into thinking it's yours, your problem fixed. Have you, since you found out about what it is, have you gone to, it doesn't sound like it, but have you gone to any, audiologists, psychologists, psychiatrists about this? Have you thought about doing that? Or has it just been kind of more of a sense of being able to manage it pretty well, just keep going down this path?
John [33:10]: Yeah, I think, no. So I have not reached out and talked with any professional about this. I think primarily because pretty isolated triggers for me. And once that incident is done, I can move on. So it's not preventing me from doing the things that I need to do or I want to do. However, though, I mean, as I listen to the folks that you've had on the podcast to deal and just conversations with you, it's not at the top of my list of things that I need to address. But certainly, I think it would be worth digging in a little deeper to see what things have they have professionals identified and things that they're recommending.
Adeel [34:03]: Your situation does seem pretty stable. There's a lot of people who it starts to balloon pretty quickly in certain age periods in terms of like types of triggers. Yeah. And yours seems like it's been pretty stable for like 15 plus years. Yeah.
John [34:25]: Yeah.
Adeel [34:26]: So it might be, yeah, there's no reason why that, I can see why that would change. And that's my professional opinion.
John [34:32]: And I'm going to take it. Well, yeah. And I feel, you know, I feel so fortunate because, you know, when I, when I talked to my brother.
Adeel [34:44]: There have been some crazy differences. I mean, when you listen to the podcast, there's been some really interesting wide, wide variety of experiences that, yeah. I would not wish upon anybody.
John [34:56]: Right, right, right. And my first two conversations about misophonia were with my brother and sister. And like the two of them, their triggers are the same as mine, and it doesn't go outside of that. So... i in addition to to trying to figure out what this is i also created this oh misophonia is a strong reaction to someone eating cheetos and i mean my eyes and mind have been just really broadened in how difficult misophonia is to live with on a on a day-to-day basis and i feel I feel fortunate that mine is not beyond this one isolated trigger.
Adeel [35:45]: Gotcha. So have you, so other than myself and your siblings, have you met other people who have MISA, whether it's at work, church, you know, people who go to church?
John [35:57]: No. And certainly, you know, with learning a little bit more about it, I find myself talking a little bit more about it and being willing to try to help people understand what you know what misophonia is and and what it is for me or what it how i understand it uh you know with with trusted friends and additional family but i've not had other than you and my siblings i've not talked to had conversation or talked with anybody else that has misophonia yeah that's interesting because i mean i'm sure you've talked to a lot of members of your congregation who come to you with all kinds of problems and what whatnot and
Adeel [36:39]: I'm curious if it's ever come up or might come up in the future where it's kind of a, you know, yeah, comes up as some kind of a issue in some group or family.
John [36:51]: Yeah, and that hasn't, it hasn't happened yet. But certainly, again, I think as more and more folks talk about it and better understand, you know, more research is done and we better understand just what this means.
Adeel [37:08]: um it i think certainly broaden our conversational opportunities cool yep um okay well um yeah i guess um yeah i guess as we start to wrap it up i'm curious uh yeah any other um yeah anything else you want to mention or advice you want to give to folks uh any kind of insights you've kind of learned along the way that you want to share
John [37:35]: no no there there isn't a whole lot because i i think particularly with misophonia it's such an individual experience as i've listened to other conversations on the podcast and talking with you a deal it's pretty clear that there's no one recipe there's no one equation to say here here are the things that are going to happen And for those that are listening that are struggling and maybe saying, man, John, you have it lucky, please know I feel for you and hope you continue down this journey to put around you a safety net of sorts to continue to allow you to live life and have the opportunities that everybody does and that this doesn't have to be a barrier the way that it is anymore.
Adeel [38:33]: Yeah, you're right. Everyone's experience has been quite unique. Well, there's been a lot of similarities, but a lot of differences. Definitely nobody has it. I wouldn't call anybody lucky. Sure. It's interesting to learn about all this. Cool. Well, John, thanks. I'm probably going to see you tomorrow, but it's good to talk to you in this socially distanced way.
John [39:01]: Yeah, thanks, Adeel. Have a good night.
Adeel [39:03]: All right, everyone, thanks for listening. Hope you're all doing well at home, wherever you are. Please leave a rating and review on iTunes. And until next week, wishing you peace, health, and quiet.
Unknown Speaker [39:48]: you