Leanne - Finding solace in solitude: A journey to peace.
Transcript
Adeel [0:01]: Welcome to the Misophonia podcast. This is season five, episode 25. We're getting up there and still plenty of episodes left this season. My name is Adeel Ahmad and I have Misophonia. Today I talked to Leanne. Leanne put her money where her mouth is and actually bought a large six acre property out in rural North Carolina where she could be away from her Misophonia triggers. We talk about all her challenges that finally led her to make that decision and buy some isolation. We talk a lot about the challenges that she's had to face in her workplace as a nurse. She's actually had to deal with a surprising amount of pushback, mockery, and gaslighting for her misophonia. sometimes from the most unlikely places. But through it all, as you'll hear, Leanne has always taken the high ground, where I know many of us would probably have blown a fuse much earlier. So I think it's important to hear how she thinks about the awareness and acceptance void that we face in the world. You can shoot me an email at hello at MissiphoniaPodcast.com or hit me up on Instagram or Facebook at Missiphonia Podcast. And we're on Twitter at Misophonia Show. You can also just message inside the Misophonia podcast app. Once again, as always, thank you Patreon supporters. If you want to contribute, you can check out the website at patreon.com slash Misophonia podcast to find out more information and about the swag that I'm giving away. And also remember the cheapest, easiest way to reach more people is to leave a quick review or rating. or share the podcast on your social media all right now here's my conversation with leanne welcome leanne to the podcast good to have you here well thank you i uh i am excited to be here thank you very much of course no uh my pleasure um you want to tell people kind of kind of roughly where you where you are and what you do well i just moved
Leanne [2:08]: to six and a half acres here in Kings Mountain, North Carolina, which is near Charlotte. I bought land, obviously, so I could have some peace and serenity and distance from triggers. And I am an RN. I work with patients who have cancer and we give them their radiation treatment.
Adeel [2:31]: Oh, very cool. Okay.
Leanne [2:33]: Yeah.
Adeel [2:33]: Yeah. Interesting. Um, yeah, let's, let's, let's maybe talk about, um, yeah, the, the move. How, how recent was this? Was this move?
Leanne [2:43]: I closed beginning of August and I moved in beginning of September. So I'm still in boxes. Yeah.
Adeel [2:49]: Excellent. Okay. Um, so yeah, tell us kind of what was happening before. What, what prompted this?
Leanne [2:56]: The past 20 years I've kind of lived in suburbia. I did live in Florida in a development and it was fine because it was and I'm not trying to be cliche but it was older people tended to be older people and so and you weren't allowed to have a basketball hoop out in the driveway. You know there were rules so it was fine. The triggers were very low. Not a lot of dogs barking. Then I moved to the Charlotte area and my daughter didn't want to live out in the woods by herself. So I decided I would live in suburbia and it was horrible. It was in a cul-de-sac and there were dogs barking and balls bouncing and music blaring and, you know, just a lot of triggers. And so the minute she graduated from high school, I sold. And I rented for a year out in the country until I found a place. And then I finally found this place. And I'm not free of triggers, trust me. People have dogs, but it is way less than it was where I was living in suburbia.
Adeel [4:17]: yeah no i understood yeah suburbia i mean it's not urban downtown but it's it's almost um some ways worse because you don't have that the constant white noise you have a lot of sudden triggers um and okay and interesting so then um okay so florida wasn't wasn't too too bad um uh no that's right yeah i think a lot of us kind of uh dream about getting to the point where we can kind of uh get a whole bunch of acres away from everybody um yeah and it's not enough trust me six and a half is not enough um right so what's around you there
Leanne [5:02]: Well, I live at the end of a dead end road. And truthfully, I am covered on two sides by state park property. So no one can ever build. So I do have one neighbor who I don't know how far away she is. I'm bad with distances, but she's up on the hill. So when her dog, big old dog barks, it is like boom, boom, boom, bark. But the good thing is she doesn't let him sit outside. and bark for a long period of time. So, you know, we, we, we live in the woods and the mountains. And so you kind of need a dog to alert, you know, for any activity. But again, it's not, you know, 15, 20, 30 minutes, an hour of a dog barking. Thank God. So, you know, I just have to talk myself off the ledge and realize dogs are going to bark. And,
Adeel [5:57]: until i can find 50 acres this is what i'm you know the best i could do for now right or until we start our own missifornia community which well yeah as many acres between us um yeah it's so it's so obviously it's been an issue for a while when did you actually find out um you said you were figuring this out um what did you find out this had a name and this was a real thing
Leanne [6:22]: I did not find out this was a thing and had a name until I moved here to Charlotte. And I was listening to the Bob and Sherry show. I don't know if you're familiar with that, but they're actually out of Florida, but they are syndicated. And it's a morning show. And I think it was them. I don't know. Might have been the afternoon show, but whatever. And they said, hey, there's this sound sensitivity thing where people are chewing loudly or popping gum and it has a name. So this was probably, oh, 15, 16, 17 years ago maybe. But I've been dealing with it since I was around 10 and I'm 55. Finally found out that it has a name that I'm not just insane, you know, as we all feel like we're crazy.
Adeel [7:14]: Right. Yeah.
Leanne [7:14]: What's going on?
Adeel [7:16]: Yeah. Yeah, exactly. And well, maybe let's rewind all the way back. And how long, you know, when you start noticing it.
Leanne [7:29]: I was around 10. I shared a wall with my two brothers and bedroom wall. And they would, of course, be talking and goofing around as boys do. And I would scream and yell at them to stop talking. Of course, they would laugh and talk louder. And that's my first memory of it. And I don't know. why or how it all began. But that's my first memory of and and to this day, you know, they're like, Well, remember, we were going up and you'd always be yelling at us. And I'm like, Well, yeah, but, you know, now they understand that it's got a name and it's got an actual mythology behind it. You know, I wasn't just controlling or crazy.
Adeel [8:22]: right so it's interesting because you know it's it probably didn't start as soon as you um had those rooms kind of assigned i'm i'm always curious kind of like when does it when does it switch when does it go from right you have you have the room next door there's you know it didn't suddenly start making it didn't suddenly start talking to each other loudly right But, you know, it's time when there's hormones happening, like there's, you know, things are like your kids are kind of changing. Yeah, let's talk about like something about that age when, yeah, something maybe clicks or trips. It's always interesting to think about what could have caused that. Was there anything else happening around that time, like any stresses around home or in your life?
Leanne [9:17]: well um you know in the 70s you know parents raised their children a little differently and and not throwing my parents or my mom under the bus but you know that you were spanked and you were hit and you were just so that's the only thing that i can say that may have been a little abusive about my childhood. There was like no alcoholism. There was no anything else. Just, you know, a little bit of chaos. I didn't really understand why I would do things wrong, you know. But I do remember when I was little, my parents had that bedroom until we put an addition on and then they moved and the boys lived in there. And I remember listening to my parents, you know, like Sunday morning, I'd wake up and I'd hear them talking and it didn't bother me, you know, five or six years old I'm talking. So I don't know what happened at that age, nine, 10 or 11, where all of a sudden, you know, like you said, the switch was tripped. I don't know. I have no idea.
Adeel [10:37]: Yeah, no, it's interesting. Well, it's interesting. Yeah, I kind of hear what you said about all these, yeah, some things were changing. And there was, yeah, it just could have been some weird, well, not weird, but a combination of things that could have converged around that time when you start to become sensitive. How did your family members, I guess, start to...
Leanne [11:07]: guess react to your reactions well these boys like i said you know make fun of me um yeah and then the next thing that i remember is my mom used to love those hard cinnamon candies and she used to love to chew gum and she would pop and snap and then i noticed that that really bothered me you know i couldn't be around her when she would sucking on those hard cinnamon candies.
Adeel [11:38]: Very 70s.
Leanne [11:39]: Yeah, right. Or I remember one time we were in the car and she was chewing away on the gum and I was just beside myself and I was probably about 12, 13. And how do you even put it into words? You don't even know what's going on. You know you're sitting there wanting to literally kill yourself or... And I'm like, can you just please stop? And of course she started laughing because of course you don't know what to do. It sounds ridiculous. It sounds ridiculous. She could see how uncomfortable I was. I think I even started crying and that kind of made her giggle more. It was just an unfortunate... She wasn't trying to be cruel. It just happened. So then... after that then you then you try to do everything you can to be you know as visible as possible right you know and um and just bottle it up and and not right not turn it into a an external scene just kind of keep it internal exactly yes And then I started work when I was a little bit older, 18. I started working at, I grew up on Lake Erie and there's a beach bar. So I would work at the beach bar and I wouldn't get home till 4.30 in the morning. This was during the summers when I was in college. of all things the robin and again this sounds insane the robin starts chirping around that time so just as i'm trying to go to sleep here's this bird literally sitting outside my window and so then i you know gotten a feud for you know years with the stupid bird and it's no other bird you know i cannot stand the robin and i cannot stand the noise it makes it's just this incessant and it comes to the same tree it seems every freaking spring and i would hang metal pie plates out there i mean it was it's ridiculous you know again you feel like you're crazy because it doesn't have a name it doesn't have a you know what is happening what does this mean what what is wrong with me you know and
Adeel [14:00]: Right, yeah. If someone saw you doing that and started asking you and you're like, oh, I'm just trying to keep a Robin, using all this apparatus to keep a Robin away from my window, they would think you're crazy.
Leanne [14:10]: Right. And then I didn't realize a fan or a white noise machine, you know, back then that it would have helped, you know, you just lie there seating and throwing shoes out the window. I mean, you know, just the ridiculous things that you do.
Adeel [14:27]: Right.
Leanne [14:27]: It's some relief.
Adeel [14:30]: How did it, interesting, so were friends in your social environment or even at that bar, were you being triggered by outside of family and wildlife, I guess? Yeah.
Leanne [14:52]: friends it didn't really seem to manifest too much in college in the dorms which is absolutely remarkable but a couple of times if they were out there and they were real loud and i was trying to sleep um you know I acted, you know, inappropriately and they apologize. But again, you don't know what it is and you don't know what's going on. So you just put the earplugs in, you put the pillow over your head. Like I still sleep with a pillow over my head.
Adeel [15:23]: Oh really? Okay. Yeah. This is by habit. Just by habit.
Leanne [15:28]: Cause now it does, it feels weird without it there. Um, so you, and again, you don't want to appear, um, crazy so you just suffer in silence basically um and then you know did you tell your friends no i didn't know what to explain except would you stop it's 11 30 at night and can you stop running around the house screaming your heads off please i'm trying to sleep just stop right you know um i didn't know what it was what was going on or but college was generally okay um and you were able to get out what happened um when you kind of like went out on your own um well of course at robin you know in the springtime would always show up show up and i did i did end up buying um well i i rented for quite a few years after i graduated from college and i moved back home and i rented various places and of course there were dogs everywhere you go so then i decided then this was up near buffalo new york to buy a place with some land so i did i bought about three acres at the end of a dead end street and so that i lived there and thank god there were not and eat barking dogs. So then, you know, more manageable because there's no dogs. And at this point, you know, my family knew, you know, that I was probably going to eat in a different room if things got too much or to be quiet if I was going to sleep. And then moved to Florida.
Adeel [17:29]: Well, at least they went from giggling to letting you, you know, leave the room.
Leanne [17:34]: Yeah, it took a while, but, you know.
Adeel [17:39]: And this was all before you knew it had a name. Yeah, this was all before you knew it had a name.
Leanne [17:45]: Yeah, like mom would get wind chimes, you know, and I'd say, mom, can you please just... put them far away from the house, you know, just put them. Cause we had her house too. There was land there. And I said, just put them far away. Like just enjoy them way in the backyard, get them away from me, you know? And, and she would. And, um, so yeah, then I moved to Florida and then, and there was a, I lived with my parents for a little while until I found a place that to move to in Florida. And there was one night when my sister came to visit and they were up talking, you know, and I had to go to work the next day. I'm a nurse. I had to be to work early, you know, six o'clock in the morning, 6.30. And they were up late, you know, having fun. And I said, you know, I just said, can you guys just please, you know, keep it down just a little bit. And, you know, there was an issue, you know. but we talked it over and then everything was fine. And this was again, before we figured out it had a name and an actual, you know, somewhat of a reason for it. So it was still just a lot of that, and then my mother, unfortunately, when she ate, she would drag her teeth on the tines of her fork, and that's about enough to put me into orbit. So then you do a lot of fork clearing, you know, when you see the fork heading towards her, you know, where I'm trying to drown it out.
Adeel [19:26]: Okay, you're right. I was going to wonder if you're trying to get her attention or try to do some kind of a drown out situation.
Leanne [19:32]: No, I'm just trying to drown the situation out. And what I have noticed, though, even to this day, I eat my food in about 30 seconds just so I can get up and leave the table. And I never really put the two together as to why do I wolf down my food? I mean, there was always plenty of food, but it's so I can eat and leave.
Adeel [19:56]: Yeah, I mean, I think we all have, there's a tension when we sit down and eat. It's like compared to when we're just completely by ourselves, it's totally, it's like night and day. And so I think that adrenaline just kind of makes us eat fast and get up. And, you know, if we're nice, often we do dishes, make it seem like we're getting up early to do something useful, but whatever it takes.
Leanne [20:24]: Whatever it takes. You're exactly right. Whatever it takes. Oh, my gosh.
Adeel [20:30]: So... So then when you said, you know, there were incidents and whatnot, I mean, it must have been agonizing. Like, you're, you know, you're... I mean, for all it is, it's like, you know, where it's draining to... You don't want to make a scene ever. And so the times when we do decide we have to... say something that decision's not taken lightly and then when there's an incident i mean that's this it just makes it more difficult to want to explain it again the next time yes at least you know yeah it is it's um it is never an easy conversation it certainly got easier once
Leanne [21:11]: i found out that it's actually a real thing and i said oh my god i've all these you know all these years how many um 30 years that i i just think that i'm a crazy person that and it actually has a name and then and then especially with my family things got gentler you know more understanding and you know But then again, you don't want to be a person everyone's got to cater to, that everyone's got to walk on eggshells. You don't want that either. So there's still always this balance, right, of trying to not feel like you want to drive your car into a cement wall and have your mother in the car and let her chew gum because every person should be able to chew gum if they want to chew gum. Eventually she just got to where she didn't bother chewing gum around me because it's just not worth it, you know. She was gracious about it. But again, you know, you just feel like, oh, my God, my family, you know, has to walk on tippy toes around me because I've got this crazy thing in my brain. And it's ridiculous. They're just noises.
Adeel [22:30]: Right, right. yeah uh yeah no that's yeah it's interesting i mean this yeah there's just this kind of like a heightened self-awareness that we have that where it's like whether we're sensitive to the noises or sensitive or sensitive to like how we might make other people feel which is not a bad thing it's like it's like uh it's kind of a no-win situation it is it really is and then of course you you know isolate because it's just easier Yeah, you get a progressively bigger acreage in North Carolina. Yes. um and so how did you find out how did it do we did you mention exactly where you read it was it like an article it was uh it was on oh right the the top radio it was on a talk show of all things yes of course of course um and then and then so you told your family um what about um friends did you start to then open up to to strangers start you know
Leanne [23:35]: I started opening up to friends like I have one friend who I don't know what it is but when I'm on the phone with her she has to eat and I'm like listen I can't do this I said it's not you it's me but I'm going to hang up right now and then you just call me back when you're done eating you know so yeah you start to open up and of course then there's Facebook and you start posting things but Yeah, my close friends, I will tell you, work has been very difficult.
Adeel [24:10]: Okay, yeah, I was going to ask. Yeah, very difficult. Yeah, I've heard some nurses go into that because it's sometimes a lot quieter because there's just them and the person they're treating. But I'd love to hear your experience.
Leanne [24:28]: Well, I worked in the operating room for 30 years, so things are not quiet in the operating room. I've only been in the office for two years, but people are not kind. And I shouldn't say that. Some people are not kind. But gum seems to be a big thing in the OR, which I don't understand why, because... typically you really shouldn't be chewing gum in the operating room but people do and if you ask them to not it's like you're asking them to cut off their arm and I don't I don't understand it it's like it's only for an hour or two when you're in the room with me you know when we're working together can you just not pop your gum i mean how hard is it i don't i don't understand why people get so upset when you ask them as nicely as you can listen i've got this thing can you please just not you know what no matter what way you say it it is not 99 of the time not received well yeah and we're considered the crazy ones we're considered the crazy ones and and so then you become the gum nazi in the operating room that's what you're called and then When you find out that there is, yay, a system-wide policy that you are not supposed to chew gum around patients or during patient care or while you're on the phone, you dig up the policy, you find it, it's actually there, it's in writing, it's policy. So then you bring it to your boss and say, you know, look, can we, you know, try to... Enforce this? Well, how are we supposed to enforce people to not shoot them? And I'm thinking to myself, I don't know, the same way you enforce people to come and punch a time clock and come to work, you ask them to do it. I mean, this isn't what I would get from my bosses. Well, how do you want us to enforce this? And I'm thinking, well, I don't know. You're the boss. Figure it out. You know? So then... If things are very loosely enforced, there was one guy I worked with, and he was an aide, and everybody loved him, and everyone thought he was this wonderful man, and he was absolutely a nightmare. So if he wasn't chewing gum, because it was, like I said, very loosely enforced, he would come in the room and he would go, and he would make mouth noises when he was... This is a grown man who goes to church and claims to be a Christian. And I'm thinking, what is so broken in your life that you have to do this to people? Like, what is wrong with you?
Adeel [27:33]: Yeah.
Leanne [27:34]: It's just, you ask someone to stop with the gum and they do it more. They pop more and they laugh and they think it's funny. And I'm thinking, we're not five anymore. what are you doing but everybody does it it's a human it's to be the human reaction yeah so you were being laughed at by these by adults in oh yes laughed at talked about um stuff done purposely noises made purposely um there were some people that were kind you know it wasn't everyone but it just made it you know as usual misery i mean it's just And I'm thinking, why do I have to be subjected to this? Like, why can't we get disability? I mean, we have a situation where it makes it virtually impossible to be out in the world and not feel like you want to kill yourself. I mean, surely that qualifies you for disability, but yet here we are, we're all
Adeel [28:44]: struggling to work in the workforce that that that you know isn't set up for people like us yeah i mean we this should be considered i mean it is um i mean the ada is i think wide enough to include misophonia so it's just i think either not hasn't been taken advantage enough there hasn't been enough precedence But it should absolutely be covered, I think, under ADA.
Leanne [29:09]: It is covered under the ADA. And so right now, being in this office setting that I'm at, thank God my one co-worker is absolutely wonderful and she does everything she can. And again, you don't want anyone to feel like they have to walk on eggshells around you. But... They like to play music in this office. And, you know, my triggers. And I don't know why. Music didn't used to be a trigger, but it is now. And I just had an issue with a different co-worker, not my normal one, with one that is PRN, that she comes and goes. And... she likes to sit at her desk and eat and crinkle things and chew gum and suck on candy right next to me and um i and because of because of covid her desk was literally right next to me like she was a foot away from me and because of covid we're supposed to be three to six feet apart and and we can we have the room in the office that i work in and so after a couple of weeks of her just plunking herself down next to me and i'm thinking to myself why is she not sitting over in the other area like why do i have to say it this isn't going to go well i already know it's not going to go well and sure enough when i asked her if she could please you know sit elsewhere not right next to me because of covid She blew up and blew up to our boss and said that I was making her move because of noises, which... really was not the case in this actual scenario so of course now my boss is like well you're going to have to go to the doctor and you're going to have to get a letter stating that you've got this condition and um you know i don't know what allowance does you think that we will be able to make for you and and just It was not a therapeutic discussion with my boss. She tried to pretend it was. She started off by saying, well, I just want to try and understand exactly what's going on because Jen said this and said that and you asked her to move and I just really need to know what's going on. And then it just turned into a half an hour of what's wrong with me. You know, well, people are complaining about you and... and i don't understand the thing with the music and um people start you say you people say you talk about it and and i'm thinking to myself oh my god what is going on like what is happening yeah i mean it could have been a very simple like solution five seconds just move through move the co-worker exactly and i had to tell my boss i had to tell her four times It had nothing to do with the noise issue with her. It has to do with I don't want her sitting a foot away from me. And we're not supposed to be sitting a foot away from each other. Four times I had to tell my boss because she kept saying, well, I think it's the noise. I'm like, it is not. noise issue like why do i have to repeat myself i don't understand it's because of covet and why am i the one that has to tell her to move why aren't you telling her to move you see where she sits this is a healthcare and this is healthcare it's ridiculous it's absolutely ludicrous it's ridiculous so um so now i i have an appointment with a neurologist so that i can go and get it actually documented i did go for a hearing to an audiologist about 20 years ago and um she's like yep yep you got it i'm like yeah i i know So now I'm going to try a neurologist so I can actually have it documented, printed out on a piece of paper so I can take it to work. And I told my boss, I sent her a, there was a podcast with the, I can't think of her name, the audiologist out in Oregon.
Adeel [33:31]: Oh, Marcia Johnson, yes.
Leanne [33:32]: Yes, there was a great podcast that she had done explaining it and explaining how we're covered under the ADA. And I said it to my boss. It was an hour long. I said, here, if you would like to listen to this. I said, this pretty much explains everything. I said, what I have is a disability. But again, the thing with asking her to move, it actually wasn't a noise issue. And I said, and the reason I talked about it, I was telling my boss, is because I thought, well, if I'm open and honest, then people will know. And then act like adults. And then act like adults. And nobody will be walking on eggshells. They just know, well, Leanne's having a moment. Let's give her, you know, she's got to calm down. Whatever the situation is, I'm trying to deal with it on my own. If I explain to people, then they won't sit there and wonder what the hell's wrong with me, you know. They'll know.
Adeel [34:28]: Not rocket science.
Leanne [34:30]: Right, right. But apparently that didn't work either. If you don't talk about it, it's an issue. If you do talk about it, it's an issue. So then, again, you try to become invisible.
Adeel [34:43]: Wow. Yeah, I don't know what to say. It's almost like a... sick comedy your situation is uh it's almost like yeah it just uh everyone gets every situation seems more comical and worse than than the last um i i mean i i'm listening to that just kind of admiring your your uh ability to just advocate for yourself still i mean in the face of absolute um non-logic and uh absurdity that's um yeah that's that's that's interesting but yeah you're right you're i mean are i mean makes sense that your reaction after that would just be to go invisible again what are you gonna do i mean uh you want to risk your livelihood your immediate livelihood at least i'm sure you can get another job somewhere else later if you had to but uh not that i'm advocating that but um yeah that's that's an interesting situation have you i mean anybody at your i mean i mean these are people who i'm sure i mean some of them are dealing with mental health issues i mean this is like you know uh the world in 2021 um these are people who probably are not you know they they're not unaware of of mental health issues or or are they just completely oblivious is it uh um I mean, we're the ugly duckling of mental health conditions anyways. I'm just curious. Are these people who tend to be kind of like oblivious to mental health stuff in general, the people you're working with?
Leanne [36:13]: I don't know. I was so taken aback, first of all, by my coworker who did that, and then by my boss, how she approached it and handled it. I just...
Adeel [36:28]: It's crazy that you've had multiple situations of coworker and boss, a duo, which is bad cop, bad cop.
Leanne [36:35]: Yeah, the reason with the conversation with the boss, it happened the same day as I asked the coworker to move. And she went right on her computer and started complaining to my boss about me. So then my boss was like, well, we need to talk. And I'm like, okay. So then that whole conversation started where she pretended it was therapeutic. And then it became just everything I was doing wrong. So this is the thing that kills me is because of covid and everything and and are the company I work for. Tries has been really trying hard with the whole mental health advocacy and and sending out emails about mindfulness and meditation and let's on Wednesday, you know, let's meet for chair yoga, you know, whatever it is that they're trying to do. so the whole thing was just so shocking to me that um my co-worker got so darn upset that i asked her to sit elsewhere because of the pandemic and then and then turned around and threw me under the bus to my boss and then of course how my boss reacted um many things here not making sense Right. So I don't know. My boss knows that I've been trying different things. I did lose my mother almost four years ago and I was in a bad relationship also. So I'm also dealing with some PTSD and some other mental health things. I've had depression many, many years. So I've been... I even took FMLA, just not complete time off of work, just appointments that I had to go to. And my boss knows that I've been trying to deal with the PTSD, you know, so that I can become healthier and be a better person and a better nurse. And then for her to do this to me. I just could not even, I couldn't, I just, I don't have any word for it. Like, flabbergasted, just.
Adeel [39:00]: Yeah, I think everyone listening is also similarly confused. Does your boss have any other, sounds harsh, but any other redeeming qualities? Were they, you know, sympathetic to some of these other things you were dealing with at least?
Leanne [39:18]: Yes, when I handed in the FML paperwork, FMLA, you know, I didn't go into... It's not fuck my life, it's something else. No, no, it's Family Medical Leave Act, yeah, FMLA. I think I was slurring it. You know, I told her, I didn't tell her a lot, but I said, you know, between my mother and the toxic relationship that I'm extracting myself from, you know, I'm dealing with PTSD and panic attacks, which I've never had, and extreme anxiety and stuff and i i need i need to go to these appointments so i can try try to heal i was doing some different things i even tried ketamine um so she knew and at that point she seemed you know okay well i'm here to support you and whatever you need and you know just let me know what what days you need off or what hours you need off and we'll do our best you know but all this meanwhile is also happening in the middle of a pandemic when you know resources are stretched and there's not enough workers and there's not enough people to cover shifts and she's got to cover shifts you know she's got a lot of stress she had probit and she's my boss is dealing with terrible um after effects of kobe she's got her own crap going on but again just the i wish i almost wish i had recorded the conversation because it was so
Adeel [40:47]: vile it was just unnecessarily i mean i mean yeah i mean everyone has crap going on but it just seems like you know you should pick your battles and some solutions are quite simple and would make you know other people's quality of life your quality of life in this case so much better it's just uh um yeah just a bizarre uh sequence of events yeah there's a bizarre direction that your boss that your boss decided to take do you think that has something that just something about misophonia where at its um kind of point in its um in its you know in its lifetime of awareness that that people are just it's it's an easy target to kind of like go after i think it's an easy target because It sounds so ridiculous.
Leanne [41:37]: You mean if we play music, Leanne, you want to go hang yourself in the corner? Yeah, actually, yes. That's exactly what happens. That is exactly how I feel. I know it doesn't make any sense. It doesn't make any sense to me. I'm literally hanging out by my fingernails when the music is playing and I'm trying to... take care of patients and be compassionate and kind and do all the things that I have to do. Meanwhile, I can't even concentrate. I can't even think. The words don't make sense. I'm like, what am I doing here? Am I even safe? to take care of people. Thank God I'm not having to do medication calculations and things of that nature. Thank God it's an office job. But still, I can't comprehend things because there's got to be music playing in the background. There doesn't have to be music playing in the background. There's no reason for it. And if it's causing one of your coworkers to literally want to stab herself. Really? Is it worth it? Seriously?
Adeel [42:46]: Yeah, in the age of... They can put on their own earbuds, headphones. Exactly.
Leanne [42:53]: Right. Anything. And it's not for the patients because the patients are waiting in the waiting room. They're not sitting at the desk with me. You know what I mean? So you can't sit there and say, well, the patients like the music. well they're not out here with me they're in their waiting rooms where guess what there's a tv going so it it just anyway so then let's see there was something else happened that i wanted to tell you at work and i can't remember it's gone out of my head i'm almost afraid of you i'm afraid of what i'm gonna hear oh gosh it's just something there was something that happened but i can't remember oh so when my co-worker the one who's very kind to me and understanding she was gone for the day so a different woman from a different clinic came to help and she oh so my my normal co-workers typing on the keyboard is the trick turned in turned out to be a trigger god bless her it's not her fault right she's gotta type So, again, I sit there, I put the earbuds in, which my boss told me I'm not allowed to because it's against policy. It's against policy. But not that it interferes with anything because the minute a patient walks by or the phone rings, obviously I'm right there, you know. Anyway. So a different coworker came from a different clinic and she's typing, she's like, and she said this independently all on her own. She says, geez, Leanne, your keyboards are so noisy here. And I'm like, I know. I said, I know they are. She goes, well, we have, keyboards where I work and they're not this noisy. I think you can order keyboards that are quieter. And I'm like, oh my God, that would be fantastic. That would be awesome. You know, I've got this issue with the noise. And so I explained to her. So when my boss was busy telling me everything that was wrong with me that time, we had the conversation. She brought that up that, well, even that nurse, Leanne, was complaining about you. And I'm thinking to myself, She wasn't complaining about it. There was nothing to complain about. We just had a conversation. And my boss was like, well, you know, you talk about it way more than you think you do. And I'm like, what are you talking about?
Adeel [45:13]: What is happening? Are you in North Carolina, Earth? Where is this place that you work? This is crazy.
Leanne [45:21]: It's in the deep south, I guess.
Adeel [45:24]: I don't know.
Leanne [45:24]: I don't know. But that's what she's trying to tell me, that even this woman, who's the sweetest, kindest woman, and we had a wonderful day. She lost her sister a few months ago, so we were talking about grief. We were talking. She brought up the keyboard, so I chimed in. I didn't bring it up. And so then my boss is going to tell me that she's complaining about me. And I'm like, no, I can guarantee you that she might have told you that we talked about it. But I don't think that she ran to you and said, hey, Leanne was talking about her misophonia.
Adeel [45:54]: It's the keyboard Nazi over there I was talking to.
Leanne [45:57]: So anyway, so I did go ahead and order different keyboards. And they are helpful. So that helps tamp down the work triggers. So thank God there was a little bit of a...
Adeel [46:10]: You ordered them for everybody else?
Leanne [46:13]: I ordered one to see if it would help, and it did. So I went ahead and ordered three more, and I'm waiting for them to come in, yeah. Thank God.
Adeel [46:23]: Yeah, and what was I going to ask? it'll come to me i'm almost i'm almost sick of talking about your boss now no no offense no it's okay it's almost almost too much yeah it's almost too much but i'm glad i mean look you're you're i mean you're doing stuff you're buying keyboards you're I mean, it's great that you kind of bonded with that other nurse and that you have some nice people at work. There always is somebody there who'll understand wherever you are. It's a good message. Maybe moving on to, I don't know how much I want to get into this, but this toxic relationship, anything to do with misophonia, you can just pass over it if you want to.
Leanne [47:11]: No, truthfully, well... You know, unfortunately, I don't know how to explain it. He's still... He would occasionally make mouth noises thinking it's funny, and it's not, but that was, trust me, the least of the toxicity. But, yes, I don't understand that behavior either. I told him that I had this thing. He researched it extensively, and yet sometimes we'd be sitting there and he would make fake mouth-chewing noises or clicking noises or... and then laugh and giggle, and I'm thinking, why would anyone think this is funny? Like, what possesses humans to do this to other humans and to treat other people like this? It's mind-boggling to me. When you say to someone, hey, it's not... you it's me can i ask you favor please can you please you know when you're chewing your gum can you please just chew it quietly and then they go ahead and pop and snap their gum and i'm telling you well it happens nine out of ten times yeah yeah what is it with the human makeup that this is the initial that's that's the initial reaction to do and then they laugh like is it nerves is that they don't know what to do is that they're uncomfortable is it that they're going to show you that they want to do whatever it is they want to do and you can't tell them what else you're doing is asking what is that human component does anybody know and as you're as you were saying that i'm just thinking you know there's a lot of there's a lot of things that uh we you know kids do that
Adeel [49:06]: um gets goes away with maturity and i feel like this is just some behavior that we're not used to getting over it's just some childish thing that just kind of like stays and no one's ever told anybody to that it's it's not in any dear abby or any book to actually take this seriously where everything else you know i think there's there's a um a corollary from between kids and adults and people just kind of have gotten around to like manners and all that stuff right there's nothing for this and so i think nobody grows up from that stupid behavior uh challenged behavior that's from it's it's you know looking at it from a um
Leanne [49:49]: I don't even know what perspective from a observation perspective it's a very interesting phenomena I think that your initial reaction is to do exactly what you're being asked to not do to your loved one or your friend or your co-worker or anybody I mean to another human being it's just a very interesting thing that happens and it happens a lot
Adeel [50:20]: mm-hmm yeah yeah it's exhausting um yeah and then did you so yeah it sounds like you've you know you've seen therapists and various um doctors has anybody um have you even gone to anybody specifically for this not specifically and so the neurologist that i have an appointment with and um a week
Leanne [50:43]: is actually sleep. Cause I, since everything happened the past four years, I'm having and menopause sleep issues, but I'm going to talk to them about it also. And, and if they don't know anything about it or are not, if they're straight, strictly just sleep neurologist, then I'm going to ask them if he knows anyone in the area that does deal with misophonia. I know that there's a person in Atlanta, um, which if there's nobody around here in the Charlotte area, then I'm going to have to go to Atlanta because I am going to get that note. I'm going to start that whole process because I... I don't think that it is reasonable that we have to somehow learn how to function in a society that does not tolerate us. We're expected to tolerate everything. And to tell you the truth, I'm tired. I'm exhausted. It's a daily exhausting effort to go to work and act and appear normal when you're being triggered all day long.
Adeel [51:52]: And I'm tired.
Leanne [51:54]: I'm tired.
Adeel [51:54]: That's just one layer. I mean, the, everything that you've, that you've, your reactions, the reactions that you've described is just, yeah. Yeah. I'm tired. That's just on top of all that. Yeah. Well, I wish you luck in your, I would love to hear about, you know, this episode will probably go live after you hear back from the neurologist and all this stuff happens. I don't know. I'd be, I'd be, I know you have tons of stuff going on, but I'd be curious to kind of like keep in touch on, on how that goes. Um, but, uh, yeah, I will, I will definitely, yeah, thanks.
Leanne [52:28]: I'll definitely let you know. I'll let you know if there's anyone in this area. Like I said, I, from what the research I've done, I, I think there's someone in Asheville too, maybe in Asheville is not all that far away either. So if this person that I'm going, this doctor I'm going to see can help me, won't help me, doesn't know how to help me or isn't, you know, involved at all with mesophonia then i am gonna pursue the next doctor because like i said i am gonna gotta do it whatever gotta do what i gotta do yeah so but i will i'll let you know and how does your um what does your daughter think she um does her very best you know um And she knows. I mean, we talk about it all the time. You know, she knows it's a brain disorder and that it's not something that I can control and that I do my best to control it. But, you know, she's seen me at my worst when there's dogs barking and and balls bouncing. And, you know, she's seen me at my absolute worst. And I have to sit in my room and be a prisoner in my own house and know the insanity of it all and then you try to explain it to try to make it make sense and it doesn't make sense and you know you just hope that and that they understand and i think she does she understands yeah well she's not like laughing and you know no no no no she doesn't do any of that she um she loves to chew and eat her ice but she knows not to do that around me yeah yeah yeah well yeah we're not telling anybody to never do these things but uh just be a little bit more aware when yeah when it causes so much so much grief um and to not take it personal that if she does you know god forbid put ice in her mouth around me you know hey you know can you not do that honey okay you know
Adeel [54:45]: not take it personally it's not a personal attack on the person you know that's the other thing that uh actually that makes me think you know beyond like um childishness escaping into adulthood it seems like a lot of childishness gets replaced by defensiveness. Adults just give it every defensive. And so I'm wondering if that's actually what was the issue with your, you know, with your coworkers. It's just like some people are just automatic defensive on everything, you know, and then it comes out in weird ways. So.
Leanne [55:15]: yes um again not not pleasant to deal with but uh yes it's uh it's the one way it's it's the adult childishness i don't know what i'm trying to say there but you know what i mean i do know what you mean and we all you know we we have to allow everyone grace if we're expected to receive grace then obviously we have to give grace and i don't i i don't think any misophonia suffer um doesn't have that capacity because all we want is compassion and so i think we give compassion in spades because we know how awful it is when we don't receive it so of course we give people grace but when there's you know blatant attacks and And I'm not talking about the one time, the very first time you ask someone to do something and they're like, oh yeah, chomp, chomp, pop, pop, snap, ha, ha, ha, ha. But then they don't ever do it again. So then you have to calm yourself down and say, okay, you know, it just seems to be the thing that happens. But thankfully they don't do it anymore and you give that person grace and you move on. It's just the constant of people, you know, blatantly being
Adeel [56:33]: mean and cruel and hurtful you know yeah yeah i mean that doesn't make sense on many levels yeah even even without mr funny as we've talked about um yeah interesting um yeah maybe some of your other coping mechanisms i guess real quick i guess we should probably start to maybe wind down or see it's already it's already like an hour almost uh it kind of flies by um um yeah this is something you got earbuds you said um um you know you buying keyboards i mean i guess you we've kind of went over a bunch of uh bad you've you know the way you've talked about it in the face of total absurdity is another lesson for people i think or at least gives them kind of some context as to what's the worst case scenario i mean not to make a lot of your situation but it's just like it's good to know like what you know What's the worst that can happen? And usually it's better. But it's good to prepare, I guess. Yeah. Do you avoid certain friends or certain types of people or certain parts of going to grocery stores and things like that? I'm just curious. Do you have random little things that you do?
Leanne [57:46]: i avoid most situations truthfully it's just easier to stay in my house because i don't have to explain myself and i don't have to be triggered and um you know i do stuff with family but i even just today you know i went i had to get the oil change and it's just the boom boom boom with the base everyone's got there and i'm like oh my god you know And again, you talk your stuff off the edge, but it's just easier just to be here where I, you know, 98% of the time it's quiet as can be. Occasionally there's a dog barking randomly, but it's just peaceful. And I'm going to be flying in January and I'm already dreading it because you know what everyone does when they get on the plane, they throw the gum in the mouth. So I've got my noise canceling.
Adeel [58:44]: earphones that i'll be taking and but it's already dreading a trip you know this wonderful trip that i'm going on and and there's dread you know yeah no that's yeah well yeah that's i mean there's at least some cabin i try to think of the positive that's that you know when i'm traveling there's like some there's background noise from the cabin yes but yeah yeah can you imagine flying into complete silence and everybody smacking and the way you know everyone's so packed together like sardines on a plane it's almost like a disaster and you know how it works the only person popping on the gum is going to be the one sitting way behind you i mean that's just that's just how it goes it's just this miso miso law right there um yeah cool well um Yeah, Leon's been interesting. Yeah, I'd love to keep in touch. But yeah, anything else you want to tell people as we kind of wrap up here?
Leanne [59:46]: I just would love to know if anyone has successfully gotten disability from mesophonia. Is there anybody out there yet that has successfully gone through the whole process? And when and where are we building the community is what I want to know too.
Adeel [60:06]: Yeah, good questions. I should probably get a list. Maybe I'll put it in the Misfunio podcast app, like a list of maybe people who have done. um things like that successfully uh disability and then people can contact each other because you know you can go into well in speaking of community you know you can go on the reddits and the facebooks but it's just a giant free-for-all um of ranting so it's maybe not the best place no i'm talking about where we can live in peace and yeah yeah yes yes right yes uh-huh Yeah, we might need quite a, right. We'll need a lot of land, but we should, yeah, we should think about that or at least kind of have maybe a blueprint for like, if we get some land in various places, like what are some ways to kind of, I don't know, avoid, I don't know, live off the grid a little bit.
Leanne [61:02]: Yeah. Oh, there's acreage out there. We just have to buy a thousand acres, pull our money, buy some land and we can all live, you know, quarter mile apart, half a mile apart.
Adeel [61:13]: And it doesn't matter.
Leanne [61:16]: Because we're not going to be the ones with the base booming and the balls bouncing and the dogs barking. So it does need to happen. There needs to be a safe place for us. Buying the six and a half acres on my own was hard. I don't make a lot of money. So there does need to be a place for us. If they can have 55 and older and all other kinds of, you know, weird nude colonies and all these kinds of things, surely we can come together, right?
Adeel [61:46]: Right. Nude colonies made me think of, I forgot to ask about visual triggers, but I'm assuming you got those as well.
Leanne [61:53]: Oh yeah, I got them too.
Adeel [61:57]: I'm wondering, you know, apart from like space, I'm wondering if like maybe a... an architect's kind of maybe some design notes for misophones would be just materials like maybe if we had like a super heavy concrete tall building we can kind of like built cheaper when we don't need as much space and we can be very isolated in terms of sound between each floor and between each um yes i'm sure i'm sure there's well i think if each place had a firewall firewalls help oh and i should we should like um maybe we can somehow influence building codes in some cities and right and that could be the first step you know right triple pane windows and then i did see this build this building material that it didn't really look
Leanne [62:53]: very heavy and thick, but you can actually put it on your walls and your ceiling to dampen the sounds. But if there were fire, you know, firewalls above, below, whatever, next to, that would certainly reduce the sound. Because I certainly would like to not have to take care of six and a half acres by myself. I would like to live in a town, you know, a condo, but we can't do it. You know, it's not possible for us unless we build our own building.
Adeel [63:20]: right right building codes are not um right they're not written with uh misophones um in mind i'm getting like all new storm windows uh i think in a few weeks i'm very excited because there should be some noise improvements i'll yeah i'll report back on the podcast but we we need like yeah three three feet of concrete between each condo unit um anyways if there's architects listening maybe we can uh start or start a little um a lobbying auxiliary to the uh you know architect dissociation whatever it is right there's surely there's some architects with misophonia oh yeah absolutely um yeah Cool. Well, Leanne, this has been super interesting. We talked about a lot of stuff here. One more time, good luck with everything that happens. Keep me posted. Thanks again for coming on.
Leanne [64:15]: Well, thank you for having me. Thanks for doing what you're doing, spreading awareness.
Adeel [64:20]: Thank you, Leanne. I hope things worked out for you with the doctor and at work. 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 helloatmissiphoniapodcast.com or go to the website, missiphoniapodcast.com. The easiest way to message is hit me up on Instagram at missiphoniapodcast. Support the show if you can by visiting the Patreon page at patreon.com slash missiphoniapodcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [65:04]: you