Alexandra - Pianist finds harmony in managing misophonia
Transcript
Adeel [0:00]: Welcome to the Misophonia Podcast. This is Season 4, Episode 23. My name's Adeel Ahmad, and I have Misophonia. Hey, we're getting close to the end of Season 4, though there are several amazing episodes coming up to take us into the fall and into Season 5. Hit me up if you're interested in coming on the show at hello at misophoniapodcast.com or check the website misophoniapodcast.com for links to the calendar. I'll be posting on social media as soon as dates start to open up. Today I'm speaking with a very talented pianist, Alexandra, who is getting a graduate degree in piano performance. I thought this was really interesting for many reasons, not the least because it must be challenging to be on stage performing at such a high level when a trigger could really come from anywhere. We also talk about how she finally sought out treatment after a very difficult time early in quarantine and how life has been since then. Oh, and I should remind you all that our social media is Misfonia Podcast on Instagram and Facebook and TikTok. and Misophonia Show on Twitter. All right, now let's get to my conversation with Alexandra. Alexandra, welcome to the podcast. Good to have you.
Alexandra [1:19]: Thank you.
Adeel [1:20]: Cool. Well, yeah, I love to just always get to know where people are located.
Alexandra [1:25]: Right. So I'm in Madison, Wisconsin. I'm a student here at UW-Madison.
Adeel [1:32]: UW-Madison, okay. Yeah, I stayed away over in St. Paul. Can I ask what you're studying at UW?
Alexandra [1:42]: I am a piano performance major. I'm doing my master's here.
Adeel [1:47]: Oh, excellent. Okay. Yeah, I've had a number of musicians on recently, actually. So that's... Oh, interesting. Yeah, that's pretty cool. And I guess, yeah, I guess, how is it? I mean, you're, you know, musicians are very attuned to sound. I'm curious how it is in an environment like school where it also probably gets a bit intense because, I mean, you have exams, you got to concentrate and focus.
Alexandra [2:14]: is it how's it well i guess you're in your master's so it's you know you've you've been in school for a few years um maybe yeah how's it has been this year especially with that pandemic stuff going on you know it's been a crazy year just trying to adjust to online learning as a musician uh that doesn't work very well um so just like online lessons online ensembles it's been an adjustment but um You know, I've learned a lot. I've grown a lot. And it's been good. So I'm looking forward to going back to normal, though.
Adeel [2:52]: Yeah, no kidding. Yeah, I'm just imagining trying to do gigantic recitals on a concert piano, but not really doing it all remotely. Are you? Okay, so yes, you're doing everything remotely. So I guess you're in your apartment or your house or something, just banging on the piano and doing it?
Alexandra [3:13]: At the beginning of all this, yes, I was stuck at home with my piano. Luckily, we have access to our practice rooms now at school. So that's been helpful. I've been able to come to school for that and get out of the house a little bit.
Adeel [3:26]: Yeah, that's good. Okay. And at home, are you living with anybody or has that kind of been being kind of trapped at home?
Alexandra [3:35]: Yep. So last year I was with my parents in Texas. This year I've got a fellow musician roommate. We've got an apartment. She plays the flute. And we get along really well. So that's been good for being stuck at home with each other.
Adeel [3:52]: Yeah. Well, at least you got amazing music to listen to live. Is she aware of your misophonia at all? Because, you know, flute, there's a lot of mouth sounds. I'm just curious how that dynamic has been.
Alexandra [4:06]: So she is aware. She doesn't really understand what it is, which is pretty common with people. Luckily, she practices in her room with the door shut, so I don't have to deal with any of that. the noise of the actual playing. And I've actually, when I moved in with her, I'd been in treatment for misophonia for quite a while. So I didn't have too many issues with her up to this point. It was mostly back when I was at home with my family that was a challenge.
Adeel [4:40]: Yeah, no, we definitely know all about the family challenges. Yeah.
Alexandra [4:46]: so you were maybe tell me about a little bit about your your this uh this treatment uh what what was that all about yeah so um kind of go back to the start of the isolation we were in quarantine you know i've had misophonia my whole life um but i didn't really know what it was um but when we were all stuck together at home for weeks at a time it really got bad and i really just had a mental breakdown i just couldn't handle it anymore dealing with the sounds 24 hours a day, seven days a week. And so I decided I needed to look this up and see if I could get some help. And I found Tom Dozier online. He specializes in misophonia through behavioral therapy. He has been a lifesaver, just working with him and understanding what it is that triggers me. So working with him has been great.
Adeel [5:49]: Yeah, I had Tom on a few weeks ago, I guess.
Alexandra [5:52]: Oh, yeah. He's actually the one that recommended this podcast.
Adeel [5:57]: Oh, gotcha. Okay, okay. Yeah, I had one of his other clients on a couple weeks ago, and I guess he recommended her as well, Audrey. Yeah, last week. Anyways, I digress. But OK, OK, so right. So he was he was saying something about how he tries to figure out the physical response. And was that what he was kind of doing remotely and trying to figure out how to quell that?
Alexandra [6:27]: Right. Yeah. So the very first session I had with him, we just did a couple exercises, mindfulness exercises to help me figure out what happened physically to my body when I heard a trigger, which is not an aspect of my issue that I'd ever thought of before. You know, you really pay more attention to the emotional freak out that happened. And we figured out that my triggers made me clench my jaw like a lot. And so just. Just figuring that out, just that one little thing was a lifesaver. I'm not an alien from outer space. And because it was tangible, something that I knew I was doing, then it made it seem possible to make it stop. Emotions are so hard to deal with. especially when you're dealing with those triggers. It's like, there's no way I can make that stop. But punching my jaw, I can totally stop doing that. So it really made it approachable and less scary.
Adeel [7:36]: I see. So once you found out what your particular physical response was, then you're saying that made you able to kind of like maybe be more aware of that physical response and then just focus on not doing it next time you were triggered?
Alexandra [7:54]: Right. And, you know, it's a process. I had to learn to retrain my reflexes so that when I hear a sound, I don't do that anymore. Kind of like stopping a bad habit.
Adeel [8:11]: Right. And then the kind of fight or flight kind of sensation, which is a little bit more, seems a little bit more mental. Did that go down? Did that change as well? Or is that kind of sensation still there?
Alexandra [8:26]: Yeah, so over time, it's gone down. It's still, you know, if I've had a bad day and I'm super stressed, that's something that's still present and I have to deal with kind of separately. But the more I've gotten that involuntary reflex under control, the less those emotions have been an issue. You know, they're really connected to each other. And I've actually noticed if I'm in a situation where I'm hearing triggers, I can kind of feel that fight or flight response coming on. And then my automatic response now is, oh, I need to make sure I'm relaxed. And then that kind of goes away.
Adeel [9:05]: So, okay. So you're saying when you, now, now, when you, uh, when you, when you hear triggers, you first go to, to you, you add, you try to, you kind of add, you kind of add a step where you're telling yourself to relax a bit between the trigger and the reaction. I see. And the other interesting thing is I get, I've heard people say that, um, you know, when they hear a trigger, it's kind of like, It's kind of like a shock. It's kind of like glass breaking where it's not expected. But are you somehow still able to kind of like intercept that? Because that's kind of the hard part is like, oh, my God.
Alexandra [9:43]: Yeah, for sure. Before I started working on it and even as I was working on it, that was the case. I didn't. There was no warning. It was just, I'm triggered, I have to go. But as I've become more aware of what's going on in my mind and in my body when I am triggered, I have been able to learn to anticipate that a little bit and be able to stop it before it gets bad. Also, my triggers tend to be more gradual noises like chewing or sneezing. And so those are like, you know, you can kind of anticipate when those things are going to happen. And that gives me time to kind of prepare.
Adeel [10:26]: Probably at mealtime. Yes. It's time for dinner.
Alexandra [10:29]: It's time to relax and take a deep breath.
Adeel [10:32]: Allergy season for sneezes. Yeah.
Alexandra [10:35]: Yeah. Yeah, exactly.
Adeel [10:38]: So, okay, so you had this experience, I guess, early in lockdown. You had a bit of a breakdown, sought out treatment. And so did you notice things get better pretty quickly around your family? Or, you know, did it eventually start to, like, have you gone back basically maybe to your family and have noticed that that's actually improved there? Like, have you been tested at the original source?
Alexandra [11:09]: So actually, just after one or two sessions with Mr. Dozier, my trigger severity went down drastically, which was like amazing. It was a miracle. And yeah, so with my family, it's definitely still the hardest environment for me to control my triggers, I think, because that was... you know, the original source of them. And there's a lot of just emotions attached to that environment. But it's better. I think it will continue to get better over time.
Adeel [11:46]: What did they say, you know, about this as you were, you know, as you're going through experience this last, you know, early lockdown?
Alexandra [11:55]: Yeah. So the hardest thing was, you know, they don't, misophonia is not widely known. And many of my family members just thought I was going crazy. He just stressed out for me, locked up. They don't really believe that it's a real physical, mental issue. Luckily, my mother took psychology in college. So she had a little bit more open mind as far as that was concerned. She's actually the one who found Mr. Dozier online for me. um and they've just been super supportive once they understood what it was that it wasn't something i could help and they were really supportive and really invested in what i was doing asking what was going on how i was doing helping me with trigger tamer exercises my brother was the best he would come out with his breakfast and be like do you want me to eat this over here so you can practice he was great And that was really important, having that support during those first couple weeks, for sure.
Adeel [13:09]: Yeah, okay, okay. And, well, then again, let's maybe go back to kind of our early days with your family. Like, how did, was it kind of a typical onset around, you know, pre-teen kind of things and dealing with eating sounds around the table?
Alexandra [13:26]: Yep. I have a very vivid memory of the first time I really realized, like, The severity of my trigger, I was about 11 or 12 years old, and I was doing schoolwork at the table, and my sister was eating an apple. And I just remember all of a sudden being like, I cannot stand it. If she takes another bite of that apple, I'm going to lose it. And it was, it was kind of a scary thing. Like it wasn't something I'd noticed before. And all of a sudden it's like, I can't stand being around my family when we eat, which is something so normal that you do as a family. Um, and it just, it kind of steadily got worse from there. The more we were together, we lived in an RV for three years, shortly after. And that was, that was extra difficult. You know, an RV trailer, you're stuck very close together. And I didn't really have an escape route. And that was very difficult and eye-opening when I realized, you know, this isn't, nobody else is bothered by this. This is just me that can't stand being at the dinner table. Which is kind of like the start to me realizing maybe there's something not quite right with me, like, if that makes sense.
Adeel [14:47]: Yeah, absolutely. I mean, yeah, we definitely all grew up feeling that because it didn't have a name. And, you know, we are approaching that kind of teen years where we're all like bombarded with messages that you're going to be weird. You're going to be awkward. You're going to hate everything. We just assume that it's part of that experience. And that's probably what you're, I'm assuming what your family thought as well, is that you're just becoming like a, yeah.
Alexandra [15:16]: She's in a bad mood today. She's just being stuck up or whatever. And it's frustrating because we know that's not what's going on. But we can't explain it to people because we don't understand what's going on. Exactly.
Adeel [15:35]: So your sister took a bite of that faithful apple. But was that like a... She must have... uh you know eaten apples before uh have you ever thought about have you ever thought of yeah have you thought about what happened that day or was it uh if something just got activated subconsciously you think that that just you know i thought back to that yeah and i i'm not sure it was a long time ago yeah interesting yeah it's i don't know you know i'm sure that i experienced those sensations before i think that was just the moment when it
Alexandra [16:13]: kind of peaked, you know, and I'm not sure.
Adeel [16:16]: So you have a couple of siblings and a couple of parents. So it doesn't seem like there have been other symptoms of misfortune in your family. It's just been you?
Alexandra [16:27]: Just me. Yeah. Okay.
Adeel [16:29]: Okay.
Alexandra [16:30]: At least that they've told me. Yeah.
Adeel [16:33]: Yeah. Yeah. Yeah. Did they ever like, would you ever like tease and stuff in the family? You know, or was it just kind of like, it's a quirk?
Alexandra [16:46]: You know, at first I didn't really... I'm a very quiet person, even around my family, so I didn't really express my frustration all the time, especially when you realize nobody else is experiencing that. You kind of keep it to yourself.
Adeel [17:03]: So you weren't throwing things or anything?
Alexandra [17:06]: No, not that bad. I would usually go off on my own and decompress privately. last couple years uh one or two of my siblings just they i think they were frustrated that i would get annoyed around them and they didn't understand why i would be so upset around them and so that kind of became a point of tension between us Why don't you want to be around me? I can't explain that. I can't tell you that I can't stand the noises you make. So that was difficult for a couple of years there.
Adeel [17:43]: Yeah. Okay. So this was the couple of years that there was some tension that was in like during school, during high school, probably like soon after you started to notice misophonia? Yeah. Okay.
Alexandra [17:58]: The tension between me and my siblings started mostly when we were in the RV stuck together all the time.
Adeel [18:06]: I mean, being in a car is hell and I can't imagine being in an RV 24-7. Did it start to... So it caused tension there. Do you feel like it maybe contributed a little bit to... kind of introvertedness? I mean, that kind of sometimes comes up with folks. Or maybe it's hard to tell what's the chicken or the egg if there's even a connection. Do you think that kind of had kind of a lasting effect on kind of who you've, you know, how you've developed as a person?
Alexandra [18:37]: I think it did, for sure. I am very introverted. I don't like crowds because it's very overstimulating for me. And I don't know if that's directly because of my triggers or if it's just like an added thing. Maybe I'm naturally introverted and that was just a convenient excuse. I don't know. But I know if I'm going somewhere and I know there's going to be food, there's an added layer of anxiety there because that is one of my triggers.
Adeel [19:15]: Did you ever get diagnosed maybe for these other kind of comorbidities like anxiety and OCD? That also kind of comes up fairly often as well that there are similar issues.
Alexandra [19:30]: I've never been officially diagnosed with anxiety. Um, I've always just been a little bit socially anxious, a little bit shy, um, not to the point where I felt that I needed to go and get diagnosed for it. You know, I can, I can function in a social situation when I have to.
Adeel [19:48]: Right. Right. Yeah. I think you're probably more like me there. Um, and what about, uh, and what about with those, uh, you know, the, I guess, relations with your family? Have you, did you, did you, have you found that that has kind of, uh, are you guys kind of like. find now or did you find that misophonia kind of caused barriers or distance between yourself and any of your family members that were kind of lasting?
Alexandra [20:15]: You know, I think it could have if I had gone too much longer without figuring out what was going on. But like I mentioned, they were so supportive. Once I came to them, I was like, look, I found out what this is, what's going on. It's actually something that I need to work on and They were really quick to just rally around that and forgive and forget and just help me move on, which was really a major part of me getting over kind of the trauma there.
Adeel [20:46]: Yeah. And was that the thing last year or did you find that it had a name like sometime before that?
Alexandra [20:53]: I actually found out about misophonia as a thing about two years before I really thought about doing anything about it. You know, it was something I read about. I was like, oh, that's interesting. But it took me a while to figure out, like, oh, maybe that's me, you know, to really delve into it and connect myself to it. I think the first time I came across it was just some meme on Facebook. I was like, did you know this was a thing? It's not something you really think about at the time because you're just scrolling through.
Adeel [21:30]: Some memes are useful like that, so.
Alexandra [21:32]: Yeah, that's true. I planted a seed in the back of my head, which is good.
Adeel [21:36]: Yeah. Well, how about with friends, kind of social life? Well, you know, you said you're kind of introverted, but I'm curious about how that's kind of shaped certain friendships growing up and now. Like, is it something that a lot of your friends know about? Do you even bother to tell people?
Alexandra [21:52]: Yeah. My roommate I think is my only friend that really knows. It's just something that I don't like to bring up because then all the questions come and then you have to explain it and it's a little bit of a mess. I don't like being in groups like I mentioned so I really only have a couple really close friends and when we hang out it's one-on-one so it really just hasn't been an issue.
Adeel [22:23]: I love how you described it. It ends up being kind of a mess. That's one reason why, especially as you get older, it's like, do I really want to bother? Do I really want to play with the probability that it's going to be question after question? And then even at the end of that journey, it's like... a shrug of the shoulders and then it just more triggers. So, yeah, I do want to talk about music. I mean, do you think it affected your, I don't know, your appreciation, decision to pursue music or do you use music as a, so many questions, do you use music as kind of therapy as well? Yeah, I'd love to hear more about that.
Alexandra [23:07]: Yeah, so I don't know if it got me into music. My mom played the piano. I would listen to her teaching her students and I would sit in the other room and copy what her students were playing on the other piano.
Adeel [23:21]: Free lessons. I love it.
Alexandra [23:23]: Yeah. And it's just something that I was always drawn to, even before misophonia was an issue. misophonia became more of an issue I think I definitely did use music as kind of a retreat and you know if somebody's eating on the other side of the room and I'm pounding away at the piano I can't hear that and so it definitely kind of became a way for me to drown things out and
Adeel [23:52]: You bang on the rec mod and off. Exactly.
Alexandra [23:56]: And it brought me peace and joy. And so after a bad day full of triggers, that was something I could do to decompress. So it was definitely a therapeutic treat.
Adeel [24:10]: yeah absolutely and so um and so now you're you've pursued it as kind of did you you're doing masters uh in music performance um okay cool and did you do that also um for your um undergrad yep um i've got a bachelor's in music performance from texas a m and then the natural next step Right, right. So what do you plan to do? Be like a country pianist, teach, join a band?
Alexandra [24:43]: I love performing. Unfortunately, that is not something you can get a living off of. So I'm going for a higher degree so that hopefully I can teach at a university at some point. So I can support my performing aspirations with that income. Yeah, that's the goal is ultimately education.
Adeel [25:09]: Yeah, that's fantastic. That's fantastic. So I guess, yeah, so we talked about your friends. Has it kind of shown up in, I don't mean to pry, but in terms of relationships maybe, has it kind of been an issue that's ever popped up there?
Alexandra [25:26]: So I've never actually been in a committed relationship. But I think it's definitely been a bit of a barrier, though. You know, it's When you're with someone constantly, you start to pick up on those little things like the sounds they make when they eat. Snoring is a big one for me. Right. It's something I've thought about a lot. At some point when I do... want that in my life it's going to be something i have to deal with for sure and before i started you know really focusing on my treatment options that was very scary for me like i don't know i'm gonna die alone basically you know because i can't deal with this on a long term basis um yeah there are those questions right yeah for sure
Adeel [26:15]: Have you noticed, one reason that people kind of wonder about that is as they kind of get into adulthood, they notice that all their triggers start just kind of increasing. The number of types of triggers just increase and then there's the visual triggers. Are you noticing that as well? Like visual triggers creeping in and just generally the palette of triggers increasing?
Alexandra [26:39]: yes yeah i definitely the the last couple years it's really escalated you know it really used to just be chewing and then it was seeing someone in the kitchen getting ready to eat and yeah then it kind of went into sneezing and sniffing and other things like that and i think it's kind of goes back to that physical response once you learn to react to one thing with that response then it kind of becomes natural to start reacting to other stressful things the same way and it kind of becomes this awful snowball effect and the more triggers you have the more you gain and before at least before the treatment that you um with tom were you uh doing the usual things like headphones and earphones or i'm just curious about what were some of your coping mechanisms or just running as fast as you can mostly it was retreat i'm very much a conflict avoider and so i would just try to finish whatever i was doing as fast as possible and retreat to the solitude of my room um or like i would strategize like we were eating dinner so i would save my like crunchy salad back so that i could use that because when i'm chewing something myself i can't hear other people chewing so i would strategize the way i ate my meals to be able to drown things out and you just kind of learn these little tricks but um yeah headphones actually never occurred to me until i started working with tom um i don't know why that would have been a really easy solution
Adeel [28:22]: Yeah, yeah, yeah. And have you ever had a job that had you in any kind of like an office environment or something at school?
Alexandra [28:35]: Yeah, I worked as basically a teaching assistant in my undergrad for a while. And we had a kind of a big room where all the teaching assistants would get together to prepare for whatever. And a lot of people would take that as a lunch break or a snack break. So that was always a challenge for me to focus on my own work when my co-worker is chewing Doritos right next to me. So that was a challenge. I just kind of, you know, again, conflict avoider. I scheduled my day so that I would be in there when there weren't a lot of people in there just to deal with that. But yeah, that was a challenge for sure.
Adeel [29:17]: Yeah. And I mean, just performing too. I find that, you know, some people for some reason save all their costs for when they're in an audience. And so I'm curious, like, you know, your whole livelihood, your whole cutting a lot of your life rides on being able to focus on your work alone on stage with like thousands of people watching you thousands yet but i'm sure eventually um does has that ever uh caused a problem where you uh i don't know maybe you uh got up and yelled at somebody during performance uh not not quite but i want dramatically shut the lid on the grand piano and stormed out oh i would love to see that
Alexandra [30:00]: yes yeah for sure especially you know you go on stage the first thing you're doing is just trying to get into that mental place where you can perform and that of course is when everybody decides to sneeze and sniff and that was very that has very much but it still is a challenge for me trying to shut out those noises while i'm trying to get in the zone It's been so long since I've performed now live. I'm not sure if that's better. I'm looking forward to testing that out and hopefully in the future. But for sure, that's probably one of the most challenging parts about my professional life is the performance environment.
Adeel [30:43]: Yeah, okay, okay. Yeah, well, I'm used to the visual triggers. You can just stare at your keys.
Alexandra [30:49]: Yes, you don't have to look at the eyes.
Adeel [30:52]: Right, right, right. Very cool. And while you've been in school, have you ever been able to ask for accommodations in any way? Like, you know, can we have less people in the room while I'm being suicidal or something like that?
Alexandra [31:07]: You know, it never occurred to me. Again, it was just something like something wrong with me. I need to deal with that kind of mentality. So it never occurred to me to ask for special treatment for those situations.
Adeel [31:21]: Yeah. Have you ever met other misophones at all? I know there's some schools that are now doing support groups for misophones. I'm curious if you've ever bumped into any, whether at school or otherwise.
Alexandra [31:34]: I have never in person met any fellow misophones. I am part of a Facebook group and I've read stories online, but I have not personally met anyone who at least admits to it.
Adeel [31:50]: Yeah. So is this one of your first verbal conversations with an actual misophone?
Alexandra [31:56]: Yep. Yes, it is. excellent excellent yeah yeah you're not the first one there's quite a few people like it's the first time they've talked to somebody um so yeah that's interesting and i definitely think that's the fact like we don't like to bring it up and so maybe we do know phones but we're not talking about it because it's just not something we'd like to do
Adeel [32:15]: Right. Right. I think I just need to wear more T-shirts or something. I'm sure I'll find it. It's funny. There are the Facebook groups, but they tend to be very ranty. And so they're not the most useful, which is one reason I started this. But almost as a joke, I started a next door group in my neighborhood for Misophonia. And I have like 20 people on there. and i was like you know i i i totally forgot about it one day i logged in it's like 20 people in there and talked about this sony i'm like wow okay i mean this is definitely more prevalent than we think so like right yeah we've got to find ways to define each other raise awareness yes so i think that's great yeah i think there's definitely been a lot of movement for awareness um and i think it's one of those things where you know you you have it for so long you start to think it's
Alexandra [33:08]: know it's just a normal part of your life and you don't it doesn't occur to you that there might be other people like that until you start to see you know these facebook groups and things so i think it's been great seeing this increase in awareness and education i think it's really helpful
Adeel [33:26]: Yeah. Very cool. Is there anything you want to, you want to tell people? I know you don't know any other, other microphones, but there are a lot of people like you. So, um, and, uh, yeah, I'm just curious if, if, you know, if you have anything else you want to share with folks or even just ask me, maybe, you know, I think I, I just,
Alexandra [33:43]: Don't be afraid to ask for help. I think that's the biggest thing. If I had asked for help a lot earlier, life would have been easier. It's not something you need to be ashamed of. And I think that's the biggest message and the most important one.
Adeel [33:58]: Yeah, the shame and guilt stuff comes up a lot. We all handle in different ways, but yeah, bottling it up, the shame and the guilt of how it makes other people feel and that cycle. But it's great that you took some action last year and especially that your family is so supportive. That kind of definitely bodes well. All these things kind of bode well for the future as you take over the classical musical world. Cool. Well, yeah, Alexandra, thanks again for coming on. It's been great talking.
Alexandra [34:38]: Yeah, thank you for having me.
Adeel [34:41]: Thank you, Alexandra. That interview was a few months ago, so I hope you've had a chance to safely and quietly get back on stage. Or hopefully it's coming soon. 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. Music, as always, is by Moby. And until next week, wishing you peace and quiet.