Smooter - Journey of discovery and coping with sound sensitivity.

Adeel [0:00]: Welcome to the Misophonia podcast. This is the first episode of season three. My name is Adeel Ahmad, and I still have Misophonia. This episode is with John Smoot. John's the guy I met at the Miss Funny Convention a couple years ago, and again last year. And I chose John to kick off this season because the 2020 convention is virtual, and it's actually this weekend starting on, I believe, Thursday night, and it goes through Saturday. I'll be speaking on Saturday on what I've learned doing the podcast about community, about misophonia. And yeah, I wanted to kick it off with John. He's a passion advocate and he actually runs a number of the online groups. And he's here to talk about that, but also his origin story and some other interesting tidbits from his life. He's had miso for a while and he's got stories going back to the 80s. I mentioned the convention. That's again this weekend. I don't know. I'm sure you can still get access to it. I've had a number of past guests and listeners say that they'll be on listening to my talk on Saturday. So that should be fun. And I just want to say there are still a bunch of slots available for interviews for this season. They've been filling up quickly, but there are still some available. I'd love to talk to you. The interviews I've done so far have been amazing. There's some really cool stuff coming up. People from all over the world, again, of course. And I've got some of the leading advocates, a professional comedian who talks about misophonia. And yeah, it's just amazing. Can't wait to bring these to you starting, continuing next week. And another thing I'm going to be experimenting this season is actually written interviews through DMs and chats and emails. So if you're interested in that, please give me an email at hello at misophoniapodcast.com or you can just contact through Instagram or Facebook at Misophonia Podcast or even on Twitter at Misophonia Show. All right, well, without further ado, here's my interview with John. John, welcome. Good to have you finally on the podcast.

Smooter [2:12]: Thank you. Good to finally be here.

Adeel [2:14]: John, I met at, well, if your listeners know probably by now, I met you a couple of years ago, a couple of conventions ago. And yeah, we're relatively in touch on social media, trying to get community growing for me. So good to have you here. Obviously, as a listener, you kind of know, I like to kind of find out roughly where people are located. And yeah, tell me about you.

Smooter [2:41]: Well, I'm in the Los Angeles area and currently I don't leave the house because we're under complete lockdown right now. This is on the, I don't know, depending on how things go, the tail end or the middle portion of the whole coronavirus pandemic and the protests and also, unfortunately, counterproductive looting and terrorizing that is going out there as well, going on out there. So they've got most of California on lockdown, I believe.

Adeel [3:11]: Yeah, so interesting, interesting times. Well, you know, we'll probably get into some of that, like how is it during work from home and all that stuff or just being at home, put it that way. But yeah, so let's, you know, I haven't heard or maybe I don't remember too much of your kind of life story. Do you want to just roughly talk about kind of like around when this started for you and what you kind of remember from back in the day?

Smooter [3:39]: the origin story of the smoother sorry that's what i my nickname um started to develop the miso triggers very gradually somewhere between the ages of 15 and 17 which was a long time ago because i'm in my very early 50s right now um so it was the mid 80s and uh i just started to think people were really rude you know with bad eating manners and stuff um but i did notice that it started to bug me more than it should have and bug me to the point where i could actually kind of feel it if that's if that makes sense oh yeah um and actually just to jump ahead several years now that things are more developed with my miso and also with my hopefully my maturity at least a little bit um my miso triggers the way they affect me because they're not the same for everybody but it's kind of like a that hangover you get, not the hangover itself, but the sensitivity that comes with it. So imagine you're laying in a bed and you've got a massive hangover or a massive migraine so that the non-drinkers can relate. And the curtains have been opened and someone comes in with a metal pan and they're beating on it with a wood smith. Something like that. That's what my triggers are. And I kind of noticed that starting to grow for like, this doesn't make sense for me to feel this hurt. by people chewing with their mouth open or popping their bubble gum, which by the way, I used to do pretty well myself. And I had a neat trick. I won't get into for hiding my gum. Uh, what the, uh, teachers would catch me chewing in class where they couldn't find it. And they'd walk around feeling stupid afterwards because they would turn their back and I'd start chewing my gum in front of the class again. So maybe misophonia was a payback, uh, being a class plan. Yeah. So, Eventually, this got so bad over the course of, you know, a few years on into my 20s where I just couldn't even chew gum anymore. It wasn't just that other people were rude about it and it bothered me. I couldn't chew it. And, you know, I didn't self-trigger, but I just felt like such a hypocrite. It's just one of those things that progressively worse. And then eventually more sounds started to come into the picture. And one fairly graphic instance I'll share with you. A lot of it really is rooted in the gum. It's gone so far beyond that now, but a lot of it's rooted in that. And back at a job I had in the early 2000s, right around the time Misophonia was getting its name, there was a girl I sat next to at work. I mean, we were very close physically, our desks and our chairs, and she chewed gum like a cow. Trigger alert out there, just in case. She chewed gum like a cow, and I could usually kind of put up with a little bit but it's getting more difficult and one day she was just going nuts and I asked her to stop and she just said you're so stupid John and I'm like okay she thinks this is a big joke but it's not and then I started to feel nauseous and I went in the bathroom and I threw up and then I had to go home sick the rest of the day and I didn't know what this was misophonia was getting its name around that time but I still wasn't going to know for like another 15 years um And I just felt so, uh, what's the week? I can't put it any other way. Very weak. It's like, how does a guy throw up because a girl has got bad manners? And I did make up my mind at that point, whatever this is, I just used to tell people it was some weird personality for I could get past, but whatever this is, never again, will I let it push me to that point? So, you know, we call it fight or flight for the most part. I'm pretty much light. I don't want to fight with anybody. Um, And I never did let it get to that point again. Thank God. And then years later, a boss who I'm still close to and friends with on Facebook found a, an article on misophonia and she posted it apparently thinking of me, but forgot to tag me in it. And my wife happened to see it. So she tagged me in it and my boss said, Oh yeah, that's exactly who I was thinking of when I posted it. And I saw it on my page. My wife hadn't told me what, you know, cause I don't know if I didn't talk to her yet that day or what, but, I saw it on my page, and I've been tagged in this article. It said something like, do you hate the sound of slurping? Which, like I said, by then there were other noises besides the dumb chewing and the popping and whatnot. And I thought, okay, this is just some kind of joke that my ex-boss and my wife were playing on me. And I opened it up, and I read it, and I could feel my mouth, my jaw, drop to the floor. And I, not quite, but was almost in tears by the time I was done reading it. And I'm like, Pardon my French, but who the F gave authorization to write my biography?

Adeel [8:30]: Right.

Smooter [8:30]: And right after that, you know, I started looking stuff up on my own, found the Misophonia Association, and started looking at the, what used to call them boards, what are they called now? Group pages? Yeah, like forms and, yeah. Yeah, that sort of thing. And a lot of it was Misophonia Association, and this was in 2016 when this all happened, and I was really looking forward to this conference and waiting for the dates. And for those of you out there in radio or podcast land who don't know, the 2016 conference actually became the 2017 conference because they had to reschedule it. So I had to wait like another six months to go to Vegas. And there was kind of an irony in that because I guess some people didn't want to go to Vegas because they were afraid to be triggered by the noises of slot machines and coins there. Um, but that didn't bother me at all. I love Vegas. And as far as my triggers go, there's nothing in Vegas that's going to trigger me that I can't get anywhere else in LA or Tennessee or wherever I may be. So I was okay with that. And I went and I felt like I'd found long lost family because here's a bunch of people like me that were many of them sitting around thinking they were crazy while I was sitting around thinking I was crazy. None of us were crazy. Although this is driving us crazy. And, uh, it was, it was a great weekend. And, uh, or a couple of days through into the weekend. And I've gone to everyone since so far. It was a long story, wasn't it? I just took you through 30 years of my life. Over 30 years.

Adeel [10:04]: Yeah, that's great. You summed it up well there. And yeah, it's interesting. So after that, that's one of the first or one of the rare kind of physical responses that I've heard about of somebody actually having to run in the bathroom, throw up, you know, we have bottled stuff up inside. It's, um, I haven't heard that often of somebody actually like having a, that kind of physical reaction. And after that, you said that you didn't, you did, you swore that you were not going to get to that point again. And you were going to use flight as your kind of mechanism. How did you do that? Like, were there, uh, would you, did you literally just leave every time you heard something or how did that, how did that go? And did you ever lapse in, you know,

Smooter [10:46]: I think a lot of it was automatic. I mean, really, I guess I did a lot of explaining in my summarization there of my life history. I did say, never mind. I don't think I consciously at that, or excuse me, never again. I did say never again. I don't think at that point I consciously said I'm going to run away and not beat people up or, you know, risk getting beat up, whatever. I think that just getting away became my automatic response. And then once I knew what misophonia was and started talking to other people in the miso families, I put it such as yourself and reading things. I think I just kind of came up with the realization. I don't want to hurt anybody. And that's kind of one of my pet peeves. There's a lot of great articles out there about misophonia. And I know that everybody's well-meaning, but I'm, getting a little concerned because we need to grow the awareness of it and i see that happening but i think with that there's misconceptions going on out there um being promoted unintentionally i'm sure um like the picture of the girl covering her ears and squinting that's that's not how everybody reacts you know some people just leave uh and we're not like that all the time and you know i'm worried that someone's thinking You know that, oh my gosh, if I chew my gum in front of a misophone, they're going to go ballistic and, you know, mutilate me or something. And that's not the kind of thing I want out there. And I hear people talking about fight or flight, and I just kind of realize, really only realized it maybe a few years ago, that I'm probably more of a flight person. I can't say I've never had somewhat violent thoughts about this situation. know what the triggers do to me um but never really extreme never serious never anything i wanted to act upon even on my worst agitator i prefer just to get away

Adeel [12:34]: Yeah, and you're right. I mean, I hear about a lot of the violent thoughts, but it's almost never that I hear about somebody acting on it. It pretty much ends up being glares and or leaving. And in that period when you felt you realized something was wrong until you heard about... So were you maybe subconsciously doing things like, you know, wearing your earbuds a lot or, I don't know, did you have any coping mechanisms during those years when you weren't sure what it was or didn't think it was anything special?

Smooter [13:11]: This is where I have to admit a lack of intelligence on my part. At the first conference, I met a gentleman that some of you have probably seen in a movie called Quiet Please or through other mediums. He's a musician named Paul Tabachnik. And he carries around musicians' headphones, or earplugs rather. And he turned me on to those, and I didn't know he was wearing them, which was kind of the selling point for him. He's like, yeah, you didn't know I had them in there, right? I'm like, oh, when I get back, I'm going to order some of those and try that. And I got the same ones he was getting. They were the Heroes Musicians Earplugs, if anyone's looking for them. And I would recommend them if they work for you. I actually have moved on to some others that worked a little better for me personally. And totally forgot where I was going with that, dude.

Adeel [14:05]: Oh, yeah. I was just talking about it. Yeah. So in your life story, I was kind of diving into like that period before you knew it was me. But you knew something was up. Like what kind of coping mechanisms did you have? Oh, yeah. Then you start to talk about how you have very, very low intelligence.

Smooter [14:22]: Oh, yeah. Yeah, that's right. So I get back and I start using these earplugs and I start remembering I love to go to the movies. I don't do it much anymore for the obvious meso reasons. Right. But before it really escalated, I was the guy that would go to see a movie that I thought was going to suck just so I could be in a movie theater. That's how much I enjoyed going back when I could go. And as the thing started to progress, and this is a great example, in movie theaters, I would grab a bunch of napkins when I'd buy my popcorn that of course I could eat and no one else in the theater could. And I would stuff my ears full of itty bitty napkin pieces to try to block out the sounds of others who were eating their popcorn. And so here it is years later, I finally know what this is, but how on earth did I not figure out that maybe if I tried shoving some earplugs in my ears, I'd be a little less miserable.

Adeel [15:12]: yeah wow and so uh yeah i mean i guess that was less intelligent i mean i know a lot of people were hearing about it recently they're googling for it but back in the day you couldn't really necessarily like in the 90s you you know these search engines weren't or around you couldn't just google like you know want to tear my ears out or or sound sensitivity and then find this stuff so um yeah, you do what you got to do, shove paper in your ears or what have you. Okay, interesting. So yeah, totally DIY MacGyver solutions you were doing. And then, yeah, and then you were given this article And you said you almost broke down in tears, probably. Almost. Yeah. Of course not. Yeah, almost. So what was it like after that? Did you immediately start to get new coping mechanisms? Or I don't know, did you start telling everybody about it? How's your reaction?

Smooter [16:15]: Well, once I was over feeling like an idiot for something I should have figured out on my own 25 years or so earlier.

Adeel [16:21]: No, I mean, yeah. It's hard. I mean, how are you going to figure it out? It seems so weird when you explain to somebody. But continue. Yeah, sorry.

Smooter [16:31]: No, that's okay. I hate to admit this, and you're going to edit this out. At least I hope you are. I forgot the question. Two times I've woke up in the middle of the conversation.

Adeel [16:43]: No, it's not good. I think I was asking, oh, yeah, so you found out what it was. How did your life change?

Smooter [16:51]: Okay. I'm going to be really honest here. My life changed mostly for the better, but not entirely. And I think that's just part of misophonia, and we have to deal with it. And those who may hear this and are new maybe need to know this ahead of time. Um, at first my thought was I'm not crazy, at least not for this reason now. And, uh, so that, that gave me, that gave me the warm fuzzies, you know, I felt great. I'm like, Oh my gosh, there's a reason I'm like this. I actually was, was in leadership at a job at the time. And, uh, we had a meeting and I told my bosses, I was going to do this. I said, I was going to announce why pardon me. I'm going to tell some of you why I'm such an asshole sometimes. And in the meeting, I explained misophonia. And at that point, I'd only known about it for a month, but I'd done a lot of reading. And, you know, at that point, self-diagnosed. And that was great to be able to come out. I mean, I didn't want to – I'm not normally someone that likes to show all this dirty laundry, but I felt like that was something that I needed to share for my own sanity. So it's something that I don't hide, but I don't always broadcast, pardon the pun. Um, so that part of it was great. And getting the support of my family members, some of whom, some of whom used to trigger me when I was younger and became my biggest supporters before I even knew what Musa was. They're like, something's up with John and he can't help it. I gotta be cool about this around him. And when they found out, it was, I mean, nothing, nothing but love. That'll, that'll bring you to tears, um, in a good way. But the downside was, uh, at some point I started to notice that I had I was becoming more sensitive. It actually was kind of after the first conference. And while I was at that conference, I had tried to make a list of my triggers. And I just started thinking and realized there were things that were bugging me so lightly that maybe it was on a near subconscious level. And I didn't really realize it until I was looking for it. And I'm making this list that I thought was going to be three or four things. And it wound up being like a page in the account. And it was... everything from, you know, potato chips to kissing noises in a movie. And unfortunately, a lot of the triggers have grown just in the last four years and others seem to have come out in the last four years and developed. And I think that probably is the downside of knowing this and become more aware to what's, uh, gradually going to happen anyway. I guess, uh, the inevitable comes a lot faster because now you're aware that it's coming. Um,

Adeel [19:30]: And I wonder if that's because, you know, you know how stress really makes us worse for us. And I wonder if just being conscious of it, you know, I get more stressed out because when am I going to get triggered again? And maybe that's a feedback loop.

Smooter [19:44]: Yeah. Yeah, maybe. There was a study done right around the time I went to the first conference, or I shouldn't say it. It makes it sound like I don't really know what I'm talking about. I read somewhere that there was a study going on in Australia and or New Zealand.

Adeel [19:59]: Dr. John Smith here.

Smooter [20:01]: Dr. John Smith.

Adeel [20:02]: I'm just kidding. You said you were like a real expert here, but yeah, continue, continue.

Smooter [20:08]: Gave away my secret identity. The study that I was reading about, probably on Facebook, which is where I seem to do most of my reading outside of work now, saying there's a study being done in either Australia and or New Zealand that people talking about triggers with other mesophones, mesophones talking about the triggers with other mesophones are causing those mesophones to develop the same triggers. And not long after this is when I started to kind of notice my own sensitivity even after the first conference and i posted something about that to some people i'd met on at the conference and on facebook and something to say that yeah in certain situations they find themselves more sensitive afterwards so there's the downside i think maybe awareness of it makes you listen intelligent more aware of it you know maybe more aware of triggers that you might not have noticed until they had a lot more time to grow therefore making them grow I didn't realize how much the sound of the ruffling of cellophane or potato chip bag bothered me until 2016. Now it bothers me a lot more. As a kid, I love to see people making out or whatever on television and movies because I was a kid and kids, right or wrong, like to see those kind of crazy things the grownups are doing, you know? And now if that's on, I usually have to mute it at least because I certainly can't stand to hear it anymore.

Adeel [21:34]: right interesting yeah uh yeah maybe like a double-edged sword like knowing knowing about it can make you more aware of it and that like i said before like maybe a feedback loop there um and well you know maybe whoever coined the phrase ignorance is bliss was a music phone Wise questions from Dr. John Smoot there. You're right. You're right. Philosopher, Dr. John Smoot. I want to go back to, you had a lot, you were saying a lot earlier. There's a lot to unpack there about a month after you found out what it was, you went to your coworkers, right? Is that what you're talking about?

Smooter [22:13]: Roughly a month, as far as I can remember. In a department meeting.

Adeel [22:17]: Right, yes. I want to hear about, so before that, how were you treating your, or what was the interaction with your coworkers when they were triggering you?

Smooter [22:29]: Good question. And this goes, of course, over, as far as actually telling people at work about it, goes all the way back to at least the early 90s, I think maybe the first time I said something along those lines without knowing really what I was talking about, it would probably have been around 92. And it would usually be something like, look, it's not you, it's me. I don't understand it myself. I just have this weird personality flaw. And could you just maybe please chew with your mouth closed? It's painful, man. It's just really painful. I know you don't mean to, but could you just maybe do that for me? I'm not asking you to spit your gum out or whatever. And then around 98, 99, I shared an office with two women, and one of them was in love with Subway. And don't get me wrong, I love Subway. I'm not about to say I'm Subway here, but she would come in just about every day with a Subway sandwich. And she would eat that thing and make noises that I've never heard anyone else make. And they weren't loud, but I could hear them, and it was painful. And back then... not to get any employers in trouble or anything, because this was all me. I tend to work without taking a lunch a lot, because that's just how I am, at least when I have that kind of flexibility, legal or not. And this was a job where I just did it. I'd go in there at 8 in the morning, and I'd work until 6 or 7 at night sometimes, just smoking a cigarette if I needed to, because back then I did smoke, I don't now, or getting a snack or whatever, but not taking just a lunch hour. And there were many a day when I took a lunch hour that I hadn't actually planned to take because she was taking her lunch hour at her desk and killing me. So I finally talked to her about that, and I put it off as long as I could because she was a sweet lady, and I knew she was really sensitive, and I think I might have made her cry. more guilt for me but that was basically the same speech i would try to give anyone i had to at work or or otherwise you know it's not you it's me please accommodate me or i'm gonna die so now i just get to say uh you know the truth and It makes a little more sense. And it's the truth that I know some people might be embarrassed to share. But let me tell you something. It's a lot easier to tell somebody, hey, I've got this neurological condition and that noise you're making. I know you don't mean to, but it kind of aggravates it. As opposed to, look, I don't know what's wrong with me, but could you just shut your mouth?

Adeel [25:00]: Yeah. Yeah. Interesting. OK. Yeah. So, yeah, I mean, a lot of it's amazing. Yeah. I mean, you handle it, I guess, in the 90s and in the same kind of way a lot of us handle it now. You know, relatively mature. I'm impressed. And then after you. Yeah. And after you. different reactions from people? Like how how was it? How was it after that? Were there any kind of awkward interactions with people afterwards? Did relationships change?

Smooter [25:37]: I'm actually still with that same company right now. And I had been for several years at that point. And so I'd gotten to know people pretty much as well as you could with the work family. And they all they all knew I had this issue. And there's one gentleman in particular who can pop them like a cow. But when it comes to this, he's one of my best friends. I explained it to him and he went out of his way not to make those noises around me. He's also a pen clicker. You know, one, two clicks makes sense. But when you're doing a repetitive thing, I feel it like a fireworks in my skull. And he is a guy, he'll make fun of me for it, but we banter back and forth. Let me tell you something. You've got to be able to laugh at this if you're going to live through it.

Adeel [26:25]: Yeah, humor has come up as a coping mechanism.

Smooter [26:28]: Right, and everyone thinks misophones have great hearing. I subscribe to the other theory. We don't necessarily have great hearing. We have great radar for the things that bother us. So he would be across the room from me, and if he would open his you know, open his mouth, chewing his gum. I might call him on the phone from across to him and say, Hey, uh, yeah, yeah, whatever. Okay. I'm sorry. And he'll stop, but then he'll yell out something to me and I'll go, what? And he'll go, how is it? You can't hear me yelling out to you, but you, you can hear me chewing gum all the way over there. And I'll say, well, I can hear you. I just can't understand it. Uh, same thing, you know, but that's, that's our relationship. We get along. He is one of the people I really respect. And there's others too, but he's just a good example of people who've really gone out of their way to accommodate me on that, even without orders from HR or anything. But there is one guy in particular that I've known since day one there, and he thinks he's funny when he's not, and he should be really glad I'm not naming him here. We're in the meeting where I explain that, and he starts, oh, you mean like this, and starts clicking his pen in front of everybody. And I'm like, dude, don't make me sock you in front of the entire department. And then another time, it was later in the day, and I kind of put myself at risk here and there because I realized I outranked him and it looked like I was the harasser, which is not what I meant. But he's diabetic. I hope I don't have to edit this part out because I'm not trying to offend diabetics. My grandmother died from diabetes. But he is diabetic, and he was making that noise on purpose to bug me one day. And it was the end of a long day, and I was probably a little on edge. And I got up, and I walked back to him. And one would say, God in his face, I don't think that's really what I did, but I did get awful close. And I said, do you think that's funny? He goes, well, yeah, I'm sorry if you can't take a joke. I said, no, seriously, you think that's funny? You're trying to irritate me with something you know really hurts me. And you think it's funny? You're a diabetic, right? He goes, yeah. I said, how about I shove a Hershey bar down your throat and see how that works for you? And we didn't talk again for a while after that.

Adeel [28:34]: But you're still working with the guy. I mean, you've been working at this company for a while. That's an amazing thing.

Smooter [28:39]: Well, we work at home now, too.

Adeel [28:41]: Right, yeah.

Smooter [28:43]: And we're in the same department, but we haven't worked in the same room in about two years.

Adeel [28:46]: Yeah.

Smooter [28:47]: He's got his good points, too, but he's one of the people that when it comes to something like that, he doesn't know the boundaries.

Adeel [28:54]: Right, yep. We've all run into some of those, yeah.

Smooter [28:58]: And now that you mention it, and I'm not going to get into the entire work relationship, he and I actually used to be really close work-wise before all this. And that certainly put a big dent in that. And we're not really close work-wise now. And it's in part because of some things he did to aggravate my misophonia in recent years, whatever he meant to. And I honestly don't think he was really mean to until he found out it was bothering me. and there's other aspects of his personality so yeah it's a good thing we don't work together maybe it's bad chemistry right uh well i mean speaking of like you you said you're working for mo you've been working for home for a couple years now or just since this whole covet thing just since covet started um i was actually very much against that because i thought i knew myself years ago on and said i could not work at home because i'd be too distracted But now I have a family and other things going on in my life that kind of started lately made me think that it might not be so bad if I could work at home and I'm probably mature enough to do it without, you know, moving off. Right. And then COVID happened and I thought, well, here's my chance to find out. And, you know, I feel much better off with my overall situation. I don't believe my productivity has gone down. Misophonia wise, I'm much more at peace. And that's not to say that there's not an occasional noise here. that can do something like when my daughter is eating her breakfast or lunch and doing what I refer to as bowl banging. And I know she doesn't mean to, but I can shut the door and that's the end of that. At work, you don't know who's going to come around the corner, what the guy in the next cubicle is going to be doing. So it's done wonders for my misophonia just not having to go to the office. I know a lot of people are feeling a benefit of it for one reason or another. That's one of my main reasons. There's other people who want to go back to the office. I'm kind of hoping they leave me here when this is over. I'm hoping they find this was a, what's the word I'm looking for? The cost effective measure, you know, kind of a forced test that worked out and maybe they'll just let me continue working from here for however much longer I may be working for them. That would be great. You know, and then I feel kind of bad because I know some people are miserable and I'm actually, you know, enjoying lockdown for the most part in a situation that's not a good situation. Looking at it that way, I don't feel like I should be enjoying it.

Adeel [31:23]: right but and i'm looking at you i'm looking at you know because you got you got the you got the uh the video one and speaking of tools you got the the new pod pros airpod pros um and you were talking you're talking about the uh the hero ear earphones before do you want to um uh the musician headphones or earbuds or whatever it is um do you want to talk about like some of the pros and cons of some of these uh earphones that you've used over the years originally as i said i did use the heroes

Smooter [31:52]: uh musicians uh earbuds and and those are great um they have a filter in them to let some noise in because the musician needs to be able to hear something and i think after a while it's just i needed a little more resistance to outside noise when i'm wearing them so these they just go right into your ear and i don't see anything indicating a size i remember specifying a size but on amazon I shudder to say the name of the brand. I just looked it up to make sure. Askilt. Not spelled the way you think, but that's how I pronounce it. It's A-S-K-I-L-T. Askilt earplugs. So you can stick the Askilt in your ears and you'll feel better about your miso. Askilt for the Scotsman who's wearing nothing underneath. So these are just like a rubbery, silicone-y kind of material. They They sell them a couple different ways, but the way I usually order them is a pack of two sets. They come in a little case, and one of them is yellow, and one of them is clear. Sometimes one of them is white. The clear is obviously the least conspicuous for if you're going to be out in public. The yellow is something that I would maybe, you know, if I needed to wear earplugs while I'm sleeping, which occasionally I do, then I wear those. But, yeah, I would recommend these. I would also recommend... the heroes I was originally using because we don't all need the same thing and I thought those are great and then for the ultimate in jamming your ears up I used to order skull screws quite a bit and I would actually go back and forth between those and the heroes until I found this is the ones I use now is more of a common ground between the two but skull screws will make you almost deaf and the reason they call them skull screws is you put them in your ear and you actually twist them in

Adeel [33:43]: And then they kind of expand or something?

Smooter [33:46]: I guess. They just form fit really well. They're not that conspicuous, though, I got to tell you. They don't make them unclear. They're this big gray thing. But if you're more concerned about what you're hearing than how you look, you can't go wrong with that, right?

Adeel [34:00]: Yeah, yeah, of course.

Smooter [34:02]: And then the, yeah, I'm wearing the iPad Pros, if I could talk about those for a second. Yes, please do. Even though they're not paying me, and I wish they would, because they could certainly afford me. I bought the original Apple AirPods because my wife wanted a pair, and I bought them for her, and I thought, well, I can't not get a pair for myself. It might help with my miso, and plus I'm a tech guy, and I want a new toy. So I bought us each a pair, and I had problems with those because I couldn't get them to stay in my ears. And apparently I have ear holes the size of Coke bottles, I guess. So I would buy, you know, accessories that third parties sold on Amazon. I bought probably five or more different ones to try out to make them fit. And most or all of them, you couldn't put them in their little charger. And folks, if you don't know what I'm talking about, you're going to have to look this up, but it's not hard to find on Google or on the Apple store or anything. That's Apple AirPods. That's the original version. And I recommend those if you can make them fit in your ears, but the accessories, if you had to use those, they're not going to be able to charge within their little charger. And that's one of the bonuses of having them. So I use those for a while. And then I went to actually, I think the conference where I met you a deal and I had them with me. And then, uh, I think it was that one. And then when I got back and this is like over the course of like three months, they announced the AirPods pro. And I said, are you kidding me? Cause I'm looking at it and it says it comes with three things and make it fit in your ears. It has this awesome noise canceling feature. So I went ahead and bought those. And those are the ones I've worn ever since. I keep the old ones around, you know, for going back to the gym, which I may do someday. But the AirPods pro much better. They have the, noise-canceling feature that works really well as I said they they give you three choices of a ear attachment so that they can fit in your ears which the originals did not do and they also have another feature called transparency that I really like especially if I'm working in an office environment because I can wear those and I can listen to music or honestly I'm mostly using the podcast and I can kind of balance it out with the sound around me so that someone walks up to me and I need to have a conversation. I can't.

Adeel [36:21]: So what does that mean? I've heard about the transparency mode. Does that duck out, duck down the music or does that increase the voice or does it do some of the frequencies where it ducks out the middle of the frequencies of the music so that the voice can go through? How does that work?

Smooter [36:37]: As far as I can tell with my naked ear, it doesn't do anything to the music or whatever sound is coming out of the headphones directly. What it does, if you think of it in three levels, this is how I look at it. You put in earphones and you're listening to music or not, whatever, you know, it's going to block out the sound around you, right? And so you've got the noise canceling, which will block out even more to some degree, completely, depending on how loud those noises are. Then you've got the middle ground, which would be just to play the music, right? And then the next level is it actually amplifies the noises around you, but blends it in with whatever you're listening to. And so how much that helps or hurt you would, I guess, depend on how high you turn up the volume of what you're listening to.

Adeel [37:20]: Gotcha. Okay. So it doesn't change the volume of what you're listening to, but it cranks up what's around you if somebody's speaking to you.

Smooter [37:28]: Right. So you'd hear them better than just, you know, if you just had your earphones in.

Adeel [37:35]: Does it feel very loud, though? Because now you've got the music.

Smooter [37:39]: Okay.

Adeel [37:40]: Cool.

Smooter [37:41]: For me. For me.

Adeel [37:42]: Yeah.

Smooter [37:43]: Um, now I've never, now that you mentioned, I've never tested it out to see if like lowering the volume on the music.

Adeel [37:51]: Well, if I'm listening to music really loud and then somebody comes to talk to me, is it going to then raise their voice so loud that the combined? Well, no. Okay.

Smooter [37:59]: No, you would have to turn the music down, but you wouldn't have to turn it down as low as you would if you had noise canceling on, or if you just didn't have the transparency function on. So you can still keep your music going if you wanted to, just at a very low volume.

Adeel [38:14]: Gotcha. Okay. Okay. Interesting.

Smooter [38:17]: So ironically, sorry.

Adeel [38:20]: And I was going to say, in terms of controls, you don't have to basically take them out of your ears, right? You can do whatever you want, like next skip tracks and all that stuff.

Smooter [38:30]: They're kind of like... If you want. It takes some getting used to, but you can program what the... You've got two ways that you work them. So you can see here. So... If I'm listening to music or want to answer a call, then I do a quick squeeze. If I want to turn on, and this is because I set it up this way, if I want to turn on one of those other features, the noise canceling or the noise transparency or cycle through between the two, then I squeeze it and just hold it until it gets where I want to go. But that's where you can change it. I have it set where I can do that with both of my AirPods because that's what I need. But if you program it for your iPhone... If you can use those functions to instead cycle to the next track or other options. I can't remember what they are now because I've had them this way for so long. But I prefer to just be able to reach into either ear and turn off the noise transparency or turn it on or put the noise canceling as needed.

Adeel [39:23]: Gotcha. Okay, so the transparency, all that stuff is you have to go into those modes. It's not like it senses somebody speaking around you and...

Smooter [39:31]: Well, yeah. You have to set it. You have to turn it on. And I can't remember what the defaults are in that configuration, but, you know, you just go into your settings through your phone and the app and, you know, find what you like. Gotcha. Pretty basic, I guess.

Adeel [39:46]: Um, well, um, uh, so yeah, let's, let's switch gears and talk about, uh, let's talk about the convention, kind of where we met, um, what, you know, um, obviously we got one coming up, um, soon, um, and, uh, it's going to be virtual. Um, you've been to a few, uh, what, what are, uh, you know, I guess, you know, what are some of the more, your, the most interesting sessions, I guess you've seen, um, at the conventions in terms of it could be research or coping mechanisms or whatever. What are your favorite parts of the convention?

Smooter [40:20]: Actually, the research and everything and the presentations, the neurological studies, that's all very important. I'm very much for that. I really like the presentation that Michael Menino gave at the last one. But I think at least after having gone to three of these so far, I'm more about the misophonia experience myself. So for the first few, yeah, I was probably in just about every seminar, and some of them were interesting, and there were people that would come and talk about different things that they're trying. Like there was this guy, actually, I think in the upper Midwest, Denver area or something, who was supposedly making some breakthrough research and did a presentation on his thing. And then there's Tom Dozier, had some interesting ideas about it as well. look up the misophonia reflex i believe he pioneered that term but at the last convention i noticed that i was spending more of my time hanging out outside but nearby uh with the other misophones and many of whom had probably seen a lot of those seminars themselves it was just to get together as a family once a year in a different location that meant a lot to me um so i enjoyed that more i'm not saying i don't go to any of the uh seminars of course i do but i think that the experiences equally important uh the educational aspect to this um i know that last time there was some talk about uh trying cbd and it's not something that i personally want to do at least not at this point but it was interesting to uh hear what they had to say about it and uh one one thing i'm kind of looking forward to and i guess maybe do it a little differently i was hoping that we could focus on the regional support groups at the next convention. And now that it's gone virtual, there's probably still a way to do that, but this is the commercial here. I have a regional support group on Facebook that I do, and it's actually, this was originally the Misophonia Association's idea, I believe Dr. Johnson's idea, in fact, and a deal, of course, you do the Midwest, and I do the Western and Pacific region, and then our friend Ellen does the Northeast and then I forget who does the Southeast, but kind of like to, you know, through this podcast, make people aware that those groups are out there on as well as many non-regional groups. And, uh, you know, hopefully we can maybe, uh, share some info on that and help people that need it get involved, you know, through the, uh, the next conference.

Adeel [42:57]: Yeah, absolutely. Yeah, you got your Pacific one that's growing quite fast. It's kind of, I guess it's up and down the entire West Coast, right? So California up to, you know, Oregon, Washington, Alaska. And maybe neighboring states too. Yeah. Oh, Hawaii, of course. Yeah.

Smooter [43:14]: Well, I think, and to be honest with you, Adeel, I think you and I are going to have some of the same members. I mean, they are regional, but I learned when I was researching to set mine up that apparently the borders have never actually been officially set by the US government as to what is Southwest and Midwest and Western and Eastern, et cetera. So a lot of people when they are organizations or what have you, when they needed to make regions did it on their own. For example, I've always thought of Denver as being Midwest. And there are others who think that too, from what I read, but it's also considered Western. So if someone from that area, wants to join my page that won't necessarily exclude them there's there's been plenty that i've sent toward you or ellen because for some reason a lot of people from florida wanted to join my page thank you florida love you this stuff it's regional though but i would refer you know them elsewhere also because i want them to have some kind of support yeah so go ahead yeah so i was gonna say i mean there are you know there are the the big groups that just have like

Adeel [44:16]: thousands of people from all over the place just kind of like ranting and throwing all their um uh you know all their you know issues that they're that they're dealing with uh well what do you think are some what are you kind of maybe kind of your your goals for the regional your your regional um group and kind of what are you what are you seeing that it offers uh people that they can't get anywhere else my attitude i tend to

Smooter [44:43]: it's, it's still growing. So, you know, my, the members are always invited to post something. I'm not going to lie and say, I might never have to take anything down. Um, but feel free to try, stay within the rules. If you remember the group and post what you, what you want. Um, if you want to post that, you know, that event, then by all means, then just do it appropriately. Um, if you need to swear a little in the venting, it's, it's okay. Just, you know, don't go crazy with it. If you want to post an article you read in, uh, on the Misophonia International page, I'm good with that because I'm doing a lot of those same posts myself. But I also really am into humor, in case you can't tell. And so I tend to post some funny things up there, oftentimes directly related to Misophonia, sometimes related because I just felt like relating it, and occasionally something that's not really related. You know, I felt like maybe you guys needed a laugh today, so here's this funny meme from Facebook or whatever. So it doesn't have to be that tight. Get what you need out of it. Get a little venting out if you need to. Help someone else who's venting. There's been some of that. The group is starting to talk and post more. But at this point, it's so mainly me doing it. But these are the things I'm doing. Occasionally, I vent too. Post that article. I went crazy last week. And I think I posted about eight hours worth of stuff one day. Must have been a lot of coffee that day. You want to post a joke? That's fine. I mean, I found a really good meme of Captain Picard from Star Trek The Next Generation as Locutus the Borg, for all of you Star Trek fans out there, reacting to a misophone trigger. And that's not even what it was for, but I saw it and I'm like, yeah, that's a misophone trigger reaction there. I put it up. So it's just get what you need to get through it, I guess. And a lot of that to me is humor. Not all of it, but a lot of it.

Adeel [46:36]: And have you, you know, another thing we do is, you might do it more than I do, I just haven't had time because of my time zone, but we have the weekly, and there's a couple of them now, the weekly calls on Zoom. And, you know, a lot of people probably think about Zoom. video calls and they're like oh my god that could be a disaster but um they've been quite cathartic and therapeutic wouldn't you say um and people keep coming back to them um you what do you think about have you been going to a bunch of those i mean uh logging into a bunch of those or um well if i could name drop another uh misophonia celebrity uh lyle uh cyber yes Lyle was one of our early episodes. Lyle was honestly, actually, really one of the inspirations for this podcast. The meet and greet the night before the last convention is when I... I had this idea after maybe a few beverages. But he was one of the stories I really wanted to get on. Amazing, amazing human being. And I, yeah, I just kind of, sorry, I derailed the conversation talking about Lyle, but please continue.

Smooter [47:50]: No, actually that's, all of your podcasts are good to deal with. That's one of my favorites. And I'll admit some of that personal bias probably because I'm friends with Lyle. um but he introduced me to the he does have an amazing story i want to downgrade his story um in fact i've listened to it a few times but um he's the one that turned me on to the first noon group um and it took me a while to actually make the time to get in there but once i got in there it's very hard for me to skip and it happens every other week and that's uh i don't know if i'm i don't know if i'm allowed to say who runs that one um publicly but then there's the other group that kind of branched off from that and that one is run by our friend ellen and i don't think that's a secret And so I kind of joined up with that one too. And so one is on a Saturday and then the other one is on a Sunday opposite that Saturday, every other week, a week apart from each other. And I try to go sign on to all of them. Sometimes it's just me and one other person. And sometimes I think the highest number I've seen is maybe eight people.

Adeel [48:48]: Yeah, I remember last year on the holidays when I had time to go to some of them. Yeah, there were like 10 people sometimes. Sometimes people would go in and out. But have you tried to do, I was going to ask you, how did your, you tried to do a Facebook rooms, I think, right? With your Pacific group. Did you get anybody? I haven't tried.

Smooter [49:09]: No. And how that works out, maybe we'll all know by the time this podcast airs. Yeah, yeah. I saw that function on there. My first thing was I didn't want to step on the Zoom groups. I tend to still stay in those groups. So I'm not sure how I want to go about it exactly. And I thought, well, maybe I could just do random groups and see how, you know, what happens if you just open up a room and people haven't signed on and see it? Will they show up? We'll see. And then, of course, scheduled groups are an option, too. I'd obviously not schedule at the same time as the Zoom groups. And so I thought, well, let's do a random test. So I gave everyone like 15 minutes notice. I posted, hey, I'm going to set up our first Facebook group room, whatever you call it. And it's going to come on at like five o'clock or something. It was just this past weekend. And so that time hit and I'm setting up the room and I managed to botch it. So then I'm posting, hey, keep watching. I'm going to try this again in a few minutes. I think I had to do something like that two or three times before I finally got in there. And I said, okay. So here I am. And it was just before six o'clock at that point. And I said, I'm going to let this run till, or maybe it's just five. And I was like, whatever it was, I was going to give it about an hour. And I said, I'm just going to sit here and see who comes in. And no one came. And so I, you know, shed a few tears and I'm just kidding. So then I got on there and I assured people in my next post, I said, Hey, none of you showed up. It's cool. This is exactly the kind of dad I'm looking for. I'm going to do a few more of these random ones and also some scheduled ones just to see if you guys show up so that I can determine if it benefits the group or not. And I'm hoping it does. But if it doesn't, then I'll abandon it, not to say it won't benefit the group, but maybe now is not the time. I'm hoping it is. So I figure maybe after about five or six total trials between the two different methods, we'll see. And if it looks like it's going to work out, then I'll keep it on going one way or another. If it's not, then I'll just maybe try to get in a year or something. Weren't you going to do one too?

Adeel [51:10]: I was probably going to do one. I was going to maybe do one this week. There's been quite a few distractions around the country. That's true.

Smooter [51:22]: It could be bad timing.

Adeel [51:25]: Everyone's a little bit preoccupied.

Smooter [51:28]: That's true.

Adeel [51:28]: I think

Smooter [51:30]: But you know what? As an admin for those groups, you can see if people have even seen your post. And I think the last time I checked, about 14 people did see that room was there.

Adeel [51:39]: Yeah. Well, that's even if they're, I mean, they could be looking for, you know, they could be looking for somebody posting, a neighbor posting, whether, you know, people are burning down the house or something. Sure. Right. Hey, so look, John, Dr. John, John, I'll cut out the Dr. John's. It's not getting funny.

Smooter [52:01]: Please send donations too.

Adeel [52:06]: Is there anything else you want to say to people? I know you're quite the advocate. Anything you want to tell people maybe who are not quite as, you know, have not known about it as this long, are not quite as in tune with the community about MISO and maybe how they can get involved or how they should cope or whatever, whatever you want to say.

Smooter [52:30]: well um just a few things one uh if you are looking for a group my group might not be your group that's for you to decide maybe it is okay and if you happen to be in the western region or at least as best as we can define the western region um alaska or hawaii you know look for the group it's called the uh i got the name of my own group the uh western pacific yeah it's a long one western and pacific misophonia support group it's a facebook group only at least at this point so you got to be a member of facebook and uh there's rules that you can read out front uh if you look you might actually run across what i call a preview page for non-members first with links to that one it's a long story how i kind of built that one by accident but it seems to have worked out um and then you send your join request and uh it gets reviewed there's a few questions you have to answer um Those questions have to be answered one way or another for you to be considered, though. And they're basically, do you or a loved one have misophonia? What's your social security number? Right. Please include a credit card that doesn't expire for at least six months. Know that you live in the right region and that you will follow rules. I mean, standard stuff, really. But just do it. I mean, it's not that hard to get in if you meet the criteria, and it's not really that stringent of a criteria. that said i do want to bring up one other thing if i may um i know there's a few of you out there who offended by the idea of regional groups you think it's elitist i've gotten a few un unhappy emails okay and i accept that one person basically flat out she was very nice about it but she told me she didn't agree with the idea of regional groups because she felt it excluded people i can see where that's coming from um I make no apologies for having a regional group. I do believe in them, but I also believe in non-regional groups, groups with other focus and groups that maybe just don't have as much focus. And there's a lot of them out there. So exactly.

Adeel [54:33]: This is another tool and it can be used to meet up in person or it's less likely. Exactly.

Smooter [54:39]: Exactly. And one of the, one of the people who doesn't like this idea is actually local to me, but that's a whole nother story. But that said, and hopefully this will all be in fruition by the time this podcast airs, I'm actually working on another group right now that is not regional. It has a slightly different focus, very similar, and I'm not getting rid of my regional group, okay? I say my group, but I look at it as our group. It belongs to the people in it, not just me. I just happen to be the guy pulling the trigger on some of the things. But I am putting together a room with it with a wider range for the planet. or maybe there can be more talking, and you say, well, you know, there's groups out there already doing it. Well, of course there are, and I'm not trying to compete with them. I just think we need more of them. That's part of the awareness, and some of them are going to come to my group, and some of them are going to go to the other similar group or ten of the same, and that's fine. Whatever works. We're not competing with each other. We're here to support each other, and that's what I want to do. So as we say in L.A., the working title of my group is Misophonia Without Borders. And that probably will be the final title of it when I'm done with it. I've been putting it together from last week. But Misophonia Without Borders. Keep an eye out. Maybe we'll see you there.

Adeel [55:54]: Well, that's great. Misophonia Without Borders. Yeah, let's end on that note. And we'll definitely plug that if that's ready by the time we air. And John, I want to thank you. I can't wait to see you again. I mean, I see you here on video, but maybe at the next in-person convention or, yeah, at some other event when we can all travel. But always good to talk to you. And thanks for all you're doing for spreading awareness and starting groups and just trying to get people together to figure this out.

Smooter [56:25]: Well, thank you too, man. I, you know, I love what you do with your podcast. I'm not, you know, now that we're not recording, I'm going to tell you something honestly. So take it as the compliment that it is. The first time I met you, I think was as I was getting ready to leave for the airport in Minneapolis or, or as the convention in or something. So I know we didn't talk that much the first time. And then last time in Denver, we spent a little more time together and, and you know, everybody's getting inspired and you were inspired. And I remember you go, I'm going to start a misophonia podcast when I get back. And I'm like, yeah, that sounds great. But, We'll see if he actually does it or not. Well, no, I didn't say you weren't going to do it, but I know how the inspiration can fade. And I thought, let's just see what he does. You know, maybe in six months I'll hear something. You have this damn thing up running in two weeks. I don't think I've ever been so impressed by that kind of motivation. You know, that was awesome. And I have shared that with others. It's the first time I've got to tell you that myself face-to-face, sort of.

Adeel [57:19]: Yeah, yeah, yeah, yeah. No, I mean, you know, it's, yeah, I wanted to feed off the energy that I got from you guys that we all kind of built together. Yeah, it's a good little group we have there. I'm looking forward to all of us all hanging out again. Thank you, John. And thanks, everyone, for listening. It's good to be back with new interviews. They'll continue next Wednesday. Still slots available if you want to have a conversation. I would love to chat. Go to misophonia podcast dot com. You can sign up for a slot right there. Music Again is by Moby, and until next week, wishing you peace and quiet.