#199 - Coping with Misophonia in Family and Work
Transcript
Adeel [0:01]:Alana, welcome to the podcast. Great to have you here.
Unknown Speaker [1:32]: Thanks for having me.
Adeel [1:34]: Yeah, so do you want to kind of tell us roughly where you're located?
Unknown Speaker [1:37]: Yeah, I'm currently, well, I'm from Scotland. You might tell my accent, but I'm currently located in California in Orange County.
Adeel [1:46]: nice okay cool yeah i was in san francisco for quite a while so uh um no longer but uh that's great and um yeah do you want to tell us a little bit about what you do i know i visited your website and seems to be a lot of stuff going on but uh yeah it's always a difficult question because there's like about a million tangents we can go off onto so um
Unknown Speaker [2:07]: I guess, well, we moved here four years ago. So we came from Scotland, me and the two kids and my husband. We've now got three kids here. Our main business is, I guess, a security intelligence company. So we work on... anything security related whether it be physical security um cyber security intelligence security investigations any of those type of things my main side is the intelligence side and that's doing um it could be from stalking cases to fraud to anything like that um that's you know that's the kind of bread and butter side of things but my philanthropy side of work is probably another huge part of my life i do a lot of work within the mental health community within um the human trafficking world that's probably my biggest side and then i have a non-profit consultancy business which is um i help non-profits make more money basically so i've wrote a few books i've wrote a book called how to ask for money my memoirs is she who dares and a few kids books so we're pretty busy a lot of work we do like we do a lot of humanitarian work so we go to areas that are in um you know we done over a thousand people out of afghanistan in 21 we've done israel we've done sudan libya we do so yeah it's pretty varied but from beginning was um I started working when I was 11 in Scotland and I've been a bank manager, I've worked hotels, I've been a debt collector. There's a huge, huge list there.
Adeel [3:43]: I know it's not about misophonia, but I kind of like, well, I don't do as many things, but I find that I'm old enough to look back in my life and I'm like, I've always just kind of followed my intellectual curiosity. Is that just something innate in you? You just kind of like, you follow what you're passionate, feel passionate about?
Unknown Speaker [3:59]: Yeah, I mean, I've always had a strong desire to help people. So everything that I've done has always had some sort of element of that there. My mum was a single mum. She raised the three of us and then she got sick when I was around 13 and then she passed away when I was about 15. So I've always kind of had that life's really short attitude and that people need help. I'm going to go and do it. I love America because I get to mix my philanthropy side with my business side. So it's great.
Adeel [4:35]: Yeah. I mean, do you want to kind of mention a little bit about, you know, childhood a little? Do you want to talk about like maybe let's rewind because a lot of stuff going on now. Let's rewind, see how you got here and maybe where kind of misophonia kind of started for you.
Unknown Speaker [4:49]: Yeah. So my, you know, I remember my youngest memory is probably around about my dad leaving when I was around about seven. You know, I remember kind of you know, when you always try and trace back your mind to think, when did it start? When did you start picking up on it? My dad left when I was around seven. And even at that point, I can't remember as much, but I got burned when I was about eight and a half. I had an accident and got quite badly burned. So I was in hospital for quite a while during that period. And I missed a lot of kind of school and time. um done a lot of my studying in hospital i was in like an incubation unit so i'd done a lot of my study in there um i have memories of my mom um maybe when i was around 10 i guess that was where the kind of chewing gum side of things are i've got very vivid memories of kind of getting really frustrated with her. But I think from the moment she died is where I can really remember everything and all the triggers started and everything coming from there. And back then, I didn't really know there was a name for it. I didn't know what was wrong with me. I just remember that somebody would do something around me that would just... spiral me out of control like my and i'm if you meet anybody that talks about me everybody uses the same sort of words very calm very methodical very like easy to talk to but like my husband will tell you when the when the anger kicks in it's like a different person kind of incredible hulk yeah um so that's really i think when i remember it i was um after my mom died and i was i was alone unfortunately a lot of things did happen around that point so i was um at 17 i was sexually assaulted by a couple of uh men and they went to prison and we went through the court case and things and i do remember more triggers coming from that that moment onwards like definitely my mom dying had an influence um and then from 17 after the sexual assault there was a lot more things um definitely things like repetitive things any light bangs any um any i think that was around the time that i just became more hyper aware like i was very very hyper aware um that you somebody comes into a room when i'm sleeping around like that it could be it could it could set me off so i guess yeah between 15 and 17 a lot happened and i think that was probably where it started
Adeel [7:19]: Yeah. And were you... And what were your kind of reactions? Was it like fight or flight? I gotta leave?
Unknown Speaker [7:25]: Or were you kind of trying to... I walked out of... Things like restaurants, you know, it can get too much to the point where I'll just get up and leave and there'll be no explanation as to why I just walked out of there. I was single for pretty much... I met my husband when I was 26, but before that, if I tried dating or anything, it was... They would just... The irritation would be too much, whether that would be the breathing, the... the way that we eat, the way that we drink, anything of those types of things, it would be too much. So I just stopped trying.
Adeel [8:00]: Were you getting visual triggers as well? I'm curious if there were other senses involved.
Unknown Speaker [8:04]: Yeah, I think mine just developed. So whereas something was mildly irritating or it would be like now, now it's... I don't know what it's like for your other guests, but over the years, it's got, I would say, it's got worse and more triggers. But visually, yeah, if I see someone chewing gum, that'll irritate me. My husband will be like, you can't even hear them, but I can see it, so it's happening now. Or if I'm on an airplane and someone's shaking their foot, they're just tapping their foot for caffeine, I can see that. I'll try a way to kind of block it from my vision and I'll look a bit crazy on a plane, but um that's that's that's and i find it's the repetitive stuff with me anything that's like of a repetitive movement that'll definitely set me off um so i think the kind of new ones in america and i hate telling people new ones because if you've if you've got misophonia then i highlight it it might highlight it to me but america love basketballs like they they play with a basketball Yeah, we're on a very family-friendly street, a lovely area in Orange County, and I've got three kids. So if it was up to me, I'd be living in the middle of nowhere on like 100 acres where I can't hear anything. But the kids, this is for the kids. So next door neighbour, their cute little boy, he loves to bounce his basketball. And literally the rage builds up inside me that I've got to either go put earplugs in or just hide somewhere or... um and it's it's awful because he's a lovely little boy yeah yeah do you um growing up did you i know you didn't well actually when did you find out that it had a name that was like i would say i'm 41 now so i would probably say my older brother told me and that would have been mid 30s like it was years i thought i was weird yeah yeah yeah no that's yeah sometime in the 2010s is kind of when a lot of us uh realized it yeah so yeah i went to see him 2012 and i think that was when he he shared it with me
Adeel [10:18]: Yeah, there was a New York Times article around that time, 2011, 2012 or so. So, yeah, you had a, you're growing up with your brother. Like, how was, like, how were people in your household reacting? Even friends?
Unknown Speaker [10:34]: I think my older brother didn't understand. Like, he would... it would end up a lot in arguments. I have been really fortunate to have met a man who can understand it. amount of things that i do like if he's breathing too heavy and i give him like a horrible loop or like yeah or if he's you know like my kids are i would also add that from that younger age from the being in hospital to my mom i developed an eating disorder during that time as well so i don't generally eat with a family um anyway but regardless i definitely don't eat with them at the table when they're all eating but i try like i really do try and sit with them so they can be with mom and see that but it does take every part of me um but then i also find that there's things that that don't and and dean will be like why is that you know like my daughter she's two now and when she's eating it's super cute to me it's really really cute and dean's like that's super noisy how is that not driving you crazy and i'm like well i don't know i don't know i have the same experience with mine yeah it's i think i think i think because it's well
Adeel [11:48]: I mean, there's obviously a dangerous notification that goes off. And I think our brain realizes that your two-year-old daughter is not a danger to you in any way. And so, you know, we'll see how that develops. As kids get older, that might change. But it's thank God that at a young age that it's not a trigger.
Unknown Speaker [12:11]: When my first daughter was born, she didn't. And then when my son was born when she was five, almost immediately she started to irritate me. And then when Harley was born, because Tommy, he's a boy and he likes pasta and he likes to kind of slurp the pasta. So that will now be like...
Adeel [12:30]: um i've heard that there was somebody who developed his misophonia at his at the time his second child was born so he was actually around your age and it was around the time when um there was an older daughter and her playing was would like wake up the nap time so it was a very tense environment at home and um and that contributed to his misophonia as well so
Unknown Speaker [12:53]: yeah yeah i mean my husband has a bit because my husband was ex-uk special forces he um has some ocd i guess like some of the stuff that goes on with soldiers so he's like a three noise person if he hears more than two noises he can start to get irritated um but i think that because that's probably from his time at war or whatever that's maybe maybe ptsd He doesn't like that label, but he likes to, I mean, I'm like, yeah, I'm with you on that one, but he doesn't, like what I say to him is the way he feels when there's three noises is how I feel when there's the repetitive sounds. And we've moved house, you know, right now we're moving house to our next house. And I'd gone and checked it out twice. I'd really, like, really checked out the street, checked where it was, checked it out. And I was like, this is perfect. It's nice in the corner. There's no basketballs. And then we went to, we've signed the lease. We've done everything. We went around to check it out the other day and the neighbors just bought a basketball.
Unknown Speaker [14:01]: No!
Unknown Speaker [14:02]: so you went and chopped it up well i mean like i've there was it was funny actually during covid we lived in aberdeen just before we moved here and we lived in an apartment so we moved there while we were in the middle of moving house and then covid hit and we were locked down and there was a like a main road outside of where we were and there was a like you know like um the the the caps that sit on the street, and every time a car would go over it, it would, like, clink.
Alana [14:32]: Oh, yeah.
Unknown Speaker [14:34]: So I made my husband one day go out and take, like, plastic cones and put it around the car so that people would drive around it. And the council, like, I thought, somebody's going to notice it and move it, but nobody noticed it for months. During COVID, nobody noticed that we just built this building.
Adeel [14:49]: There might be a UK thing that people just like, no, we'll just let it go. In America, someone will make a stink. That's really funny. Well, yeah, I mean, actually, so these conversations usually jump around, but something you said about your work, I thought was, I don't know if it's funny, but you do security stuff and stalking cases. I mean, are you out there? Because I'm assuming you have to be very quiet. That's what I'm imagining. So it's almost like a perfect job for a mystophone because you're listening for anything. Is that the kind of writing you need to be in?
Unknown Speaker [15:26]: Super quiet? Dean calls it like... I think they get blown away because I've been trying to work on it to try and work my mind to say that this is a gift that you've got rather than a negative because I can hear things that they're like, how? How did you hear that? I could be up in another part of the house and the baby could wake up and she'll just make a little movement or something and I'll hear the noise. And I think that kind of blows the family away, some of the things. And Dean does say, like, your hearing is... like off the charts and what you can hear so i try and sometimes spin it into that positive that i can pick things up that's great i think i can i can also pick up if i'm talking to someone Because a lot of the work that we're doing, we're going into some really personal stuff. We're trying to solve problems with people that they maybe don't want to be fully truthful with me because maybe they've done something silly or they've done something they shouldn't have done to get into that position that they're trying to get us to fix. And I need them to tell me the truth in order to fix it. And I can sometimes hear the way they start breathing or the way they start changing their speech that they're not telling me the truth. So I try and switch it into a superpower in some sort of way.
Adeel [16:37]: yeah no that's that's great um and yeah that's that's i try to think of it that way as well um that it's yeah have you have you um i mean have you seen a specialist or any because i don't know if you've thought about hyperacusis because that's also like that sometimes gets mixed up with misophonia in terms of like um hyperacusis is like everything sounds loud to you um
Unknown Speaker [17:02]: no i haven't looked at that i'll just type that do you have any um have you actually have you seen anybody for misophonia in particular yeah no um i did speak to my doctor in the uk and they they knew nothing about it they'd never heard about it it was just like what is that you're talking about um how did you bring it up i'm just kind of curious I think where I was living at the time, there was a lot of triggers around me and I was almost finding myself just almost in a room constantly, just in a bad... way so i've gone to speak to them about it and then they just attributed it to things like the eating things or you know maybe because you've got an eating disorder you don't just like hear people eating and things so they would put it down to that i do know that in the i remember coming to the us and thinking they do have a lot more here so i should look into it but i've always just put it to to the back but the one thing i did do which is a bit out there um i ended up working with a non-profit that was a veteran non-profit that worked in the plant medicine space and they bring like medicine to the veterans after like PTSD and things and I talked a bit about what what life was like for me and they were like maybe you want to try one of the retreats so I went to a retreat in Mexico and got into that space a bit and I have to say that afterwards the triggers did become less like there was definitely like something about the the plant medicine space i think does help and i only done like a very small i have considered possibly going on a proper like ayahuasca retreat or something to to look into because there was definitely a change in me from from the first small
Adeel [18:52]: I should connect you, well, Paige, P-A-I-G-E, she was on a podcast a couple of years ago. She runs retreats, not specifically from Misophonia. She has Misophonia, but she runs plant medicine retreats in South America. And I feel like she might have had some similarities with your childhood as well. So that might be an interesting person to talk to. She's based in New York, I believe.
Unknown Speaker [19:15]: Yeah, there was a girl on the retreat with me. we'd all got there and and once we arrived it was you know this amazingly beautiful location in mexico we were all there it's very tranquil very serene just the ocean and as soon as she got upstairs she started chewing gum but i mean to the point it was incredibly loud it was and i thought i can't do this whole retreat with her doing this so i was trying to actively avoid her and move to different spaces and then actually when i when i went into the the kind of medicine space she she was there and she was almost like telling me that I had to find a way around it. And then later on, I found out that she had all these really dark-rooted anger issues with her time in the military and things, and we ended up working through some of that. So I did find that I had more sympathy for her once. And then I said to her that something for me that really hurts me and makes me angry is that, and would you mind maybe And she was like, yeah, of course. It was great. But I think when I'm in it, when I'm hearing the kid bouncing the basketball or when I'm doing it, I'm just like, will you stop? I can't express it properly. I feel like most people, when you do say it nicely, explain to them what it is and explain what it does to you, I think they are sympathetic to it.
Adeel [20:45]: Yeah, it's tricky because when you're in the moment, that's the worst time to talk about it. And then when we're not in the moment, we don't really want to think about it. Like, I don't actually really think about it unless I have to record a podcast. So it's like, you know, it takes so much energy that you don't want to think about it. And so it's hard to find a good time to have that conversation.
Unknown Speaker [21:04]: That was another reason I didn't used to join the groups. Like, there was a lot of, like, Facebook groups and there was things like that. I don't want to hear about more triggers. I don't want to hear it because then I'll start listening. But the day that I reached out to you, I was working and the basketball was just actually blowing my mind. So I just started to see if there was anything. And then your podcast popped up. So I thought, oh, that might be interesting to chat with someone because there isn't a lot of people that can understand it properly.
Adeel [21:30]: Yeah. Yeah. Have you, I mean, have you met anyone with misophony? I mean, you obviously are involved in a lot of organizations and nonprofits. And I think, I think I saw something about coaching on your, on your website. So you cross paths with a lot of people. I'm just curious if misophony has ever come up with anybody you've talked to.
Unknown Speaker [21:46]: And it really does tend to be the very high powered, the business people, the people that I come across have got some really like strong capabilities. They, sometimes it's they don't know how to express it to their family and it's definitely that part that's holding them back um i i'm quite open about it because i feel like if people understand then they don't um you know i've never there is kind of a generation that's been born out of entitlement and things and i would never be like no i've got this thing just stop doing that but i feel like if somebody's just aware that actually that that is like hurting me a little bit um I know that my husband's cousin, when... So Dean would tell people because people would find it strange that we don't sleep in the same bedroom. Like, isn't that really weird? Your husband and wife don't sleep in the same bedroom. And then he'll say, well, Alana's got this, like, hearing problem. And then so... Then his cousin one day said, you know, I've got the exact same thing. She says, every night I struggle. I was like, well, tell your husband that you want to sleep in the guest room or whatever it might be. And then he, I think she said she tried to speak to her husband about it, but he got really upset thinking that it was... him that she didn't want to sleep with her like and you know with with my husband at first he was like you know we should be cuddling we should be together and i'm like completely fine but when it gets to the like we need to go to sleep now i have to go or i'm going to hear you all night i'm not going to be able to sleep it's going to be uncomfortable um so now he's fully fine with it and he understands it just it still does come across strange to other people that we don't do it but um so yeah his cousin and she told me about it and she told me about the struggle to sit at the dinner table with her family and how her husband gets a bit angry and how the kids can get a bit irritated and so that was nice for her to speak to me to be able to have an understanding and actually my one of my current business partners I've actually been business partners with her for a while, but I went to her house a couple of months ago for some, we were doing some work out her area. So I went to her house and she ended up something, her husband came to the table and he was eating and I kind of, just kind of held my breath and just waited there. And she got up and left. And I thought, why she just got up and left? So I kind of asked her and she said, I can't stand him eating. And then we got talking about it. And then it turned out she had so many of the same triggers. But she's brought this amazing house in North Carolina, literally in the middle of nowhere where she can't see or hear anybody apart from nature. So again, I think it's just one of those things that... There may be way more people, but nobody really talks about it.
Adeel [24:32]: Yeah, it's good to just talk about it and have some awareness because I think people do consider black and white where they think we're entitled or feel entitled and they're just trying to control the situation. Which is not the case. Like I said before, we usually don't really want to think about it. We don't want it to be a big part of our life. You obviously have so many things going on. I've got a couple things going on too. So we don't want to make a big deal. We don't want to control the situation. but it's just something we can't help. And we do try to work on it. I mean, you're on this podcast. I'm doing the podcast, but it's just, yeah, it's a tough nut to crack. And I think like your story, there's probably roots that go back many years and decades. And so it's, you know, a lot of work.
Unknown Speaker [25:20]: yeah and i think i i think i got upset recently when um because even as i'm speaking to you right now i can hear my own self doing it because i'm thinking about it but um the way that people pronounce their s's and in america it's very like it can be especially in california they kind of say it very long at the end of their their word and i never that never bothered me before and then i was in an airport and i just heard it and then that was it i couldn't hear it and the worst bit for me was when i put my headphones in and put my i could still hear it over that and i was like oh no so that was that got me because i thought oh no that's a new one and it never bothered me before and everyone speaks so i meant to get away from people speaking right
Adeel [26:02]: Do you, how do you bring it up? Have you brought it up with your kids? I don't know how old they all are, but is it something that you've kind of mentioned or tried to explain to them?
Unknown Speaker [26:11]: yeah my my daughter struggled for a while because um she does have a tiny bit of a uh a louder breathe and her her she's not even a noisy she likes gum like her friends all chew gum and things so i have to tell her that her friends can't have gum in the house when they when they come round and they all think you know this is california like all the kids are chewing gum so um She has to tell her friends, look, you can't do that around my mum because it irritates her. So we speak about it a lot. We speak about everything. We speak about human trafficking. We speak about the dangers that season. So we do try and speak about everything. She still doesn't fully understand. how how much it can get me but she sees the difference in me like i could go from being happy to to really angry in a second the only problem i have with her she now finds it slightly funny so she'll sometimes do things that deliberately try and and that can be like 10 times worse um and my son he's eight and unfortunately i can see that he's developing it a little bit as well. That's upsetting because I've really tried to not show it around them because I don't want them picking up, but I can see he can react to people if someone's eating near him or I can see he just kind of flinches and I'm thinking, oh no, he's picking up too. and you you said you've talked to him about it as well like it seems like you're wrong again it's one of them where dad kind of jokes you know like um oh i see your name and i'm thinking well they're they're aware of it so they i as you say i try my best not to highlight it at all because the one thing i don't want is for them to to develop it because my younger brother, like my mum died when he was sick. So I raised him and I didn't know as much then. So I was always pointing out like when he was making noises or when he was bouncing balls or doing anything. I was pointing out to him all the time. And his wife now tells me that he has a lot of the same things now. And I think it's probably my fault for always pointing out to him that he's then picked it up.
Adeel [28:23]: Yeah, I mean, well, I mean, yeah, I don't know what the cause and effect is, but, you know, he's probably, I mean, to put a positive spin on it, I feel like he's, you know, if I were him, I feel like in a situation like that, it's likely that he doesn't want, he didn't want you to be upset. So he probably noticed something, so he's kind of like protecting you in a way, I feel like is what children do. So, how about,
Unknown Speaker [28:52]: in well how about like social friends and stuff do you do you talk about it much with like you know girlfriends and things yeah i haven't got a huge social group you know when i met my husband my husband was military and he is literally the life and soul of the party like everybody loves him everybody's friends with him is he on the cover of that book back there yes like an actor oh okay wow okay yeah no one wants to mess with that guy he is he's just everybody loves him everybody adores him and nothing really bothered as i say he's got like those little things but nothing really bothers him like everything he takes pretty much well um you know apart from you know if you beep your car horn at him he'll he'll go a bit crazy but um Friends, it's like a handful. I would say it's less than five good, solid friends, and every one of them knows about it, and every one of them respects it. I've got a great friend, Nicola, and if she's listening to this, I do apologise, but she is a noisy eater, and she can't help it, and she forgets, and then I'll just kind of give her that look, and then she'll kind of think, or sometimes they put the food away that they're eating, and I always feel really bad, but my friends are so... respectful of what it is. And they know that I'm not like that. They know that I'm not that kind of person. It's just this one thing that can send me over the edge. And I have often wondered if anyone's ever killed anybody with it because it does get me to that.
Adeel [30:17]: A lot of us wonder. Yeah.
Unknown Speaker [30:21]: um but i i for social settings like i can't go to the cinema or any of those types of things like like those that's just and the kids you know the kids are always like mom like there was one time where when dean and i were dating and i didn't want to tell him what it was that that was wrong and then he wanted me to go to the cinema um so i was like checking out all the listings and i was looking for the like the most boring the most unlikely for people to go to film and i kind of picked that we'd have a good like empty cinema and there was there was only about two people in the cinema because i picked like the later showing of the most boring film i was like let's go to that one um and that was okay but even then there was two or three people in there and i could still spot them but popcorn and all that yeah
Adeel [31:07]: Yeah, interesting. Okay. And what about, I mean, I don't know, in your coaching work or maybe I think you've written stuff. Have you mentioned misophonia in your writings or in kind of your other kind of work?
Unknown Speaker [31:23]: I probably have mentioned. I can't remember if I put it in my book.
Unknown Speaker [31:26]: I think the thing that I talk about, I've got a friend who's got an eating disorder. And we talk about it in a similar way. When it comes to either this issue, the eating disorder, whatever it might be, we really understand. One of my friends who's got an eating disorder, she's probably one of the most intelligent people I know. She's built an incredible business. She's done incredible things. And when we talk about why... when the eating disorder would take over, we both understand it's ridiculous. We both understand the things that we're doing or thinking or saying is ridiculous. But to be able to talk to each other and say, actually, you know, going on the scales 10 times a day, as we both have been through at one point in our life, we knew during that time that it was a ridiculous thing to be doing. But there's something within your brain that doesn't... process it correctly and I think the same thing with this is it's got to be understood that it's not it's not it's a it's a it's a process in the brain that isn't working in the same way as other people's brains do but I do genuinely believe and from everybody that I've met that it is a process that is making you way more aware than than the average person it's not I know that I think in America they call it a disability but I I it's a disability in the way that it's painful but so much so as it would be painful to be Stephen Hawkins I'm sure like to have that much information going through your brain and being able to do like it must it must always be um I always I always uh feel slight envy for people who are content you know people that can just work nine to five and just be content with a nice little simple life that's never going to be me so me neither
Adeel [33:15]: Yes, at my late 40s, middle age, I've now looked back and seen people who've done that 9 to 5, and they probably made more money in some ways, but I couldn't do that. I was just too restless and following my curiosity. But you also, again, you raised another great point. When we're doing this, our prefrontal, higher order mind knows that this is not rational. And so that's why I get a little bit frustrated when some of the therapies are targeting our higher level thoughts. That's not what needs to change. It's like something deeper inside of us. And I think a lot of our past experiences speak to that. And I feel like there needs to be more. studies of relating kind of our you know entire lives or our kind of our deeper experiences and and that's another reason why i think the plant medicines loosen things up a little bit in the brain to try to make some you know reconnections to help um hopefully permanently um you know solve some of these issues so yeah i feel with the plant medicine as well you do go in with an intention so you're going like
Unknown Speaker [34:28]: know you want to be less angry or you want to be so you're going in there with with a specific intention and i i hadn't done that with the last one but i've said like if i do go through it again i am my intention was to appreciate my senses more and that's definitely um has worked to a varying degree because i do try and get into like for example if he's outside bouncing the basketball i know that he never does it for more than maybe an hour of max So I've got to kind of get into like a meditative state and try and calm my mind and try and just, I found like the other day I just went out and done the garden. I really got really quite aggressive with the weeds and I done quite a bit there. And by the time I'd done that, he'd finished with the basketball. So it was like I managed to change rather than just sitting there in the pain. I managed to put the energy into something else.
Adeel [35:18]: Yeah, that brings up another thing I've been talking about. The fact that I don't think misophonia is purely about sound. I think it is about all of our senses. And sound is just the hardest to hide, because you can't totally shut off sound. Like, you can close your eyes. so i feel like in a few years when we learn more i think we'll realize it is some other some other kind of sensory related issue that's maybe our body trying to protect us from some old thing that happened to us um and i like that you're trying to just get in touch with the senses because i think You know, in this day and age, all of our stimulation is so processed that I think we're kind of losing, I don't know, our connection with our senses. And that could have a factor without getting too kind of like, you know, out there about it. But I think there's something greater with the senses that's going on here than just sound.
Unknown Speaker [36:10]: yeah well then i think that you know things like if i was getting a massage a very nice like massage and that massage therapist is breathing sometimes i can hear it but it's not irritating me because i'm in a calmer state my brain waves um have maybe slipped into delta or theta even so i'm kind of a lot calmer and i'm not getting into that um so i can i can deal with that a little bit better i think it's like heightened states like if i'm in an airport and there's all these things going along there's a lot of i try and find myself you'll find me kind of in a corner in an airport somewhere away from as many people as possible um but i do think that It's saved me along the way, my alertness and my strength of hearing and I'm very, very aware and I can spot things that maybe other people might not be able to spot. I think that's really for me what I'm trying to do is to put it into a positive as much as I can possibly put it into. I, you know, if there was a cure for it, again, the hearing thing, you know, my great-auntie Molly, one of the greatest inspirations of my life, the last probably 20 years of her life, she lost her hearing. And it was horrible. It was a horrible life for her to live. She couldn't hear what we were saying. We had to repeat everything. We had to, like, shout to her. Some people would talk next to her and pretend she wasn't even in the room because she couldn't hear. so she she really hated not having her hearing so i have to appreciate that i do have it and i don't want to lose my hearing and I fully agree with you that it's not just the noise. There's a whole, like I can feel the vibration of a ball. I can feel like yet seeing someone move in or seeing the repetitiveness of a jaw going. And I think a lot of it for me as well is I can, this might sound really strange, but I can almost spot illness in someone. I can spot when the breathing is too heavy or there's something going on with them that And I want them to go and get checked out. So there's part of that too.
Adeel [38:19]: Well, again, it goes to something I've mentioned a few times. I feel like there's maybe a population level genetic-ish thing going on where the species is evolving. The species is running a bunch of different experiments at a time. And some of us may be just better at listening to things because we have to help the species survive. Somebody did joke... on the podcast that, you know, during COVID, they should just like let a bunch of misophones out and just, we would have found everybody who's got COVID and that would have been the end of the pandemic pretty quickly.
Unknown Speaker [38:55]: So true. So have you found that there's, you know, it, the people that you meet, have they got similarities in common? Oh, yeah.
Adeel [39:06]: Yeah, it's been fascinating to hear, you know, all the, you know, different backgrounds, the diversity of everybody who's come on. But, you know, something that I try to tell people is that, well, so many of us have something during childhood where we as a child needed to, didn't know how to protect ourselves or maybe something in our body, just in, like, it something in our body just felt that it needed to protect itself and i think at a young age your body doesn't really necessarily know which sense to kind of like use to protect itself so it it just makes a lot of sense where hearing is sometimes the you know the first thing for your first warning uh that something is up and that just kind of like sticks with you as you get older uh you don't necessarily need it and as you're old but it's just stuck Um, and I think, and that, you know, there's so many situations like parents, um, in this very memorable situations of parents, like, uh, of, of, of, you know, I had somebody on the podcast and his mom had, uh, would her schizophrenia would really get bad in the middle of the night while he's trying to sleep. and he would hear dishes being thrown against the wall i mean there's a lot of things or or just cases of abuses there's alcohol a lot of alcoholic dads maybe not abuse but like come home drunk and then they're just the child doesn't know what to do they're you know they're they're they're scared but i think in a sense they're also maybe um not wanting to set off the parent And so it's kind of almost like to put a positive spin, the child trying to protect the parent in a way. So I don't know, it's been fascinating to listen to all these situations, but there is definitely this... very wide spread commonality of something that happened during childhood. Maybe not all the siblings develop misophonia, but somebody was more susceptible, maybe through a little bit of a genetic disposition, and then the misophonia develops. It's something that honestly is just not being studied enough, but I'm trying to really harp on it.
Unknown Speaker [41:14]: Yeah, I mean, I know for me, I was definitely the more sensitive one in the family when... after dad had left and mom was you know she was just trying to still find her way and she would maybe be dating and then yeah sometimes like three in the morning there would be different people in the house and maybe shouldn't have been in the house and I always remember listening for the stairs like how loud were the stairs and you could hear if it was like a female footprint or if it was like male male footprints that were coming up the stairs so I always would listen for and how angry the stairs were like if you could hear like if someone was like stamping up the stairs or if it was just like a light I was always listening for like what kind of what was about to come up the top of that stairs because my bedroom kind of sat at the top of the stairs while I was growing up so that's quite interesting you say that because my brother he was my older brother was totally different like he was he um I'm not saying selfish like he wasn't a selfish guy but he just knew how to look after himself and do things for himself whereas I was the more sensitive one like always looking out for everybody making sure you know my younger brother I always had to protect him and look after him make sure he was okay whereas Thomas was able to more say no like I'm not doing that like you know that's not my job like somebody else do it um so that that probably makes a lot of sense like um I never really thought about that. Just when you were saying that, I thought about that staircase that used to almost give me like chills every time I would hear the noises.
Adeel [42:43]: Yeah, I had somebody say that she'd put her ear on the vents to hear like family fighting on another floor, you know, just to kind of hear the sound come through. I suddenly remember doing the same thing. This is like just 45 years later. Because when I, you know, if something was misplaced in the house and, you know, one of my parents couldn't find it, it would, like, we'd have to drop everything we're doing and just look for this thing. And it would be very tense all of a sudden. And so that switch from, like, playing as a kid and then, oh, super tense and then going back and, like, then having the only time it would stop would be when it's time to sit down and have dinner. And then my nervous system is completely jacked. And now I'm hearing people eating. So I feel like, I mean, that's got to be a connection.
Unknown Speaker [43:35]: Well, I think. My mum and dad used to, I remember before my mum and dad would argue a lot before they got divorced. And my older brother used to be very fussy on what he would eat. So I would eat anything and he would eat nothing. And my dad would get angry. And every day there would be some sort of fight at the dinner table. You know, Thomas wouldn't eat. Dad would shout. He would go and be sick. There would be like a whole argument there. And that's like, so the eating side of it wasn't really, but then, you know, and it's funny because I do have a memory when I was about five of, do you remember those like lollipops that you would suck and then it would have chewing gum inside it?
Alana [44:20]: Like really disgusting stuff.
Unknown Speaker [44:22]: I used to suck this lollipop and then when it got down to the gum, like mum would, mum would eat the gum. But I never remember that actually bothering me, but I was only like five and I hadn't really developed like, but that, um, that loudness but i think you know even just saying it out loud now like my husband now he's got a very loud voice like just inject his talking voice is loud i'm like i do guest speaking and things right now and i have to get the microphone up because my voice is very quiet and i like very quiet um and sometimes if i'm maybe upstairs and you know my 13 year old daughter and him can sometimes go head to head on things and i'll do that what you've just said there i'll listen is that a loud voice or is it have we got an argument like what what stage are we at right now um and he knows that even if we are having a disagreement i'd like to keep the disagreement at a low tone i don't like to shout i don't like him to shout i like to keep it at a low tone
Adeel [45:20]: I'm doing the same thing right now to see, like, is my kids home with my wife? Is everything okay? So, yeah. Have you heard the term HSP, highly censored person? Because that's another commonality. There's a book, there's some quizzes. It's not an official term. But a lot of people have come on who are familiar with the term. And it just means... things like you're able to read the room very, very well. Like everybody's emotions and thoughts, it's almost like amplified in your mind. It's not even just about the sound. And the day can be very exhausting if you're around people who are going through emotional ups and downs.
Unknown Speaker [46:00]: Yeah, I would definitely say I would have an element of that. And actually when my husband went, he'd done the plant medicine And when he came back, so I can really quite quickly work out if a person's kind of light or dark. Like even when we're doing it on Zoom, I'll be like, oh, I don't want to talk to this person. But if I meet someone in person that I feel like they're not good people, almost like I'm repelled. I've got to kind of get, you know, loves everyone, gets on with everyone. But when he went on his medicine journey, we were on a Zoom call one day and it was somebody that I didn't particularly like, but he liked them and we were, And he said at the end of the call, he said, Alana, I didn't like that. I didn't like that conversation. The medicine almost switched him onto that. And he was able to pick up a little bit more on a light in the dark of people. So that was interesting. Whereas I've always had that. You meet someone and you immediately think, there's something about this person that is really pushing me away. Or equally pulling me to them. Very occasionally I'll meet someone who I'm just like, you are...
Adeel [47:05]: delight you are an amazing person there's something amazing about you right right yeah that's interesting yeah again all these things that yeah people come on podcasts very these recurring themes that come up a lot um so yeah i'm glad that we're we're doing all this and kind of finding these commonalities um yeah i mean i guess you know coming up to close to an hour um that hopefully i flew by always flies by for me um yeah i don't know anything i don't know any other observations or things about your life or anything you want to plug even yeah i mean i think that it's been really interesting talking to you i mean a lot of the work that i do is around fundraising and um i do a lot for
Unknown Speaker [47:53]: that I care about. This is a cause that I've never really looked into, but I feel like the people that it probably affects are the people who could do some real good and some real changes in the world. So if there's anything that... you need from me. I mean, I do have a very good, there's very few people that I can't either get hold of, or there's usually one or two degrees separation from me. And I do a lot of work with like Harvard and Stanford and College London and all these different places. So if there's ever, whether it be fundraising or professors or anything that you need to get a hold of, always reach out.
Adeel [48:30]: No, I appreciate it. No, yeah, definitely. I want to keep in touch. And yeah, I would love to keep the conversation going. And I'm on the board of SoQuiet.org, which is a Missophonia advocacy organization that Chris Edward runs. He was on the podcast. Um, he, they, they, they get, um, you know, get donations, give out grants to research. Um, um, and yeah, I think maybe I should connect to Chris, um, because I think it would be a great conversation. Um, cool. Well, um, yeah, no, uh, Alana, this has been, this has been great. Um, yeah. Thanks for sharing your, your story. I hope, I hope some of the, um, um, you know, themes that I've heard on the, uh, the rest of the podcast and kind of, um, I mean, you probably knew that not a lot of these experiences are shared amongst all of us. But yeah, hopefully this is going to help a lot of people hearing your stories. Thanks for coming on.
Unknown Speaker [49:23]: Thank you so much for having me. It's been great.
Adeel [49:26]: Thank you again, Alana. And yeah, I think the community can learn a lot from you from a non-profit fundraising perspective. So I'm really excited about that. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at missafoneypodcast.com or go to the website missafoneypodcast.com. It's even easier just to send a message on Instagram or Facebook at Mr. Funny Podcast. On X, it's Mr. Funny Show. Support the show by visiting the Patreon at patreon.com slash mrfunnypodcast. The music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [50:25]: Thank you.