S6 E3 - 7/22/2022

S6E3 - Grace

Grace is a college student majoring in neuroscience, hoping to make an impact on misophonia. We talk about childhood trauma, dealing with high school and getting accommodations, the evolution of her parents understanding of her miso, and the many dimensions of guilt and shame about our reactions and the way they affect those around us.


Disclaimer: These are machine-generated transcripts and so are not completely accurate. However they will be manually updated over time until they are.

[00:00:00] Adeel: Grace, welcome to the podcast.

Good to have you here. Thank you.

[00:00:03] Grace: Thank you for having

[00:00:04] Adeel: me. Yeah. I, I always like to get to know where people are located. You want to share where you are and maybe what you do.

[00:00:10] Grace: So I live in New York. I'm about an hour above the city. I go to school in North Island and I'm studying clinical neuro.

[00:00:18] Adeel: Clinical neuroscience. Okay, great. And are you, is that a grad grad school there or doing

[00:00:24] Grace: No, I'm a rising, I'm a rising junior, so it's undergrad.

[00:00:27] Adeel: Okay, gotcha. Okay, cool. And is it in person now or is it still virtual? It's probably back to in person, right?

[00:00:33] Grace: Yeah, it's in person. It's been in person for the past year.

My freshman year was like all virtual and then some in person, so

[00:00:41] Adeel: clinical neuroscience. Has part of that, was part of that decision based on your experience with misophonia or something that you were always

[00:00:50] Grace: interested in? Yeah, it was my misophonia. It was definitely the first thing that led me to it originally and wanted to go into pharmacology because I wanted to find a medication for it.

But I actually looking more into pharmacy, I just, I don't like the world of pharmacy just. how big pharma works, and I didn't really wanna be a part of it, so I wanted to be more on the science side of it.

[00:01:13] Adeel: You don't like marketing drugs to everybody? . Yeah. Yeah. They do some good stuff, but yeah.

The whole marketing financial side is, yeah. Sometimes don't want to look at how that stuff's done. Yeah. But okay. Yeah. It's fascinating. This is, yeah. This is really interesting. So you it sounds like you've put, you put a lot of thought into it. Going back to high school. Maybe, yeah. Maybe let's just start at the beginning and just walk through your journey.

How, what's, how did this all start for you? When did you start noticing your symptoms?

[00:01:38] Grace: So my earliest memory was, so the way our like school district works is. Up to fifth grade is elementary school, so you go to school later than like the middle school and high schoolers. And I have three older siblings, so I remember going into sixth grade, I really didn't want to eat at the same time as my older sister because she ate her cereal without milk.

And that's my earliest memory of it and being like, no, I am not sitting there and eating with. And then I don't have another memory of it until about a year later. I had something traumatic happen in my life a few days before I turned 13. So when I eventually saw a psychologist, we think that it was a trigger for it to get worse, cause I think it was there before. It just wasn't nearly as. Cuz bef after that event occurred it just, everything started with sitting with my family at dinner. I couldn't sit there for more than two seconds without bawling my eyes out. Plugging my ears just like I would shove food down my throat just so I could leave the table as fast as I could.

And I'm sure as like I've heard some of the other podcasts, it's very similar to everyone. , what is wrong with you? ? Yeah. No one knows what's going on. My family's like, why can't you just deal with it? Yeah. So that was like the first probably two years were like that and it was a gradual okay, I'm gonna wear headphones during dinner.

And then the visual triggers started. Yeah. That didn't really help much. And then I started eating in a separate room, and that's been happening since. I was like 15.

[00:03:15] Adeel: Yeah. Yeah. A lot of interesting things here cuz obviously, trauma comes up. But interesting that you noticed it about a year before.

Yeah, I just had a conversation with yeah, another therapist, actually quite, I have quite a few conversations now, just trying to dig into like maybe. Connection with trauma, but then, or is it something maybe epigenetic where there is something that makes you more, I dunno, susceptible and maybe it sounds like maybe you noticed something early on about a year before that that maybe there's something there and just like you said, maybe just got amplified when that event.

When the cereal situation, was it for that year? Was it all, was it just a one day that you noticed it or was it every time your sister had cereal and it was just specific to that one type of trigger?

[00:03:57] Grace: It was I just don't have, and I'm not sure if it's like my brain blocking it out.

Yeah. I just don't have memory of it. I do think that I scheduled myself like around I would have breakfast a separate time. Okay. I remember specifically saying to my mom no, I am not getting at the same

[00:04:13] Adeel: time as her. Yeah. And for that, but you weren't, you didn't notice you don't remember any other types of triggers for that year until the event happened.


[00:04:22] Grace: I, it's okay. Okay. Weird. It's really just the cereal .

[00:04:25] Adeel: Yeah. Interesting. Okay. Yeah. Good good data Point for someone to maybe think. Okay. So then yeah, so obviously, as you mentioned, like sim similar patterns. Then after visual triggers start to take hold as well and your, so your parents' reaction around that time, was it helpful at all?

Or, it sounds like it was the usual kind of pushback.

[00:04:45] Grace: It was the usual kind of pushback. It was just,

[00:04:49] Adeel: was it getting kinda mocking too? I mean you had a lot of siblings, so I'm imagining quite a lot of different older siblings

[00:04:56] Grace: maybe? Yeah, they're all older. So it wasn't as much of the chewing in your face Yeah.

On purpose kind of thing. Yeah. Yeah, but it was more of it was just what the hell is wrong with you kind of thing. And it. I don't know. I just had this theory about older siblings that they just don't like to acknowledge that a younger sibling has like maybe something worse than them.

Yeah. Yeah. So I think that's what it was. It was just like, like a, your life isn't that hard stop kind of thing.

[00:05:28] Adeel: You're right. Especially the quote, I don't want, quote unquote baby of the family. Yes. Traditionally gets a little bit more, the other can, I guess the other get ignored or they get just babied or just get but I can see, yeah.

When you're the older sibling, you come up thinking, Hey, I've, you're. A more pampered version of me . So what could your problem be? What if, yeah. I Not something we want to hear either way. At least you weren't getting teased and bullied, or maybe you were, I don't know.

[00:05:51] Grace: No, it was just I think it was just frustration from everyone. Yeah. Because it was just a no, like we had no idea what was going on. So that was the hardest part of it, like those first couple years where it's like my parents are just frustrated because they're like, what is happening with my daughter?

That she can't sit at the dinner table? . Yeah. Or be breathed around because I also I had, I think it was on one of your podcasts, I had heard that dads are usually the first trigger. And that was the same for me. My dad is, I don't know if necessarily the first, but definitely the worst.

Just like any noise he makes.

[00:06:32] Adeel: And that, that supersede or that oh, even more so than your sister's cereal eating?

[00:06:37] Grace: Yes. Okay. Because my sisters, it's I do have some, like certain triggers with them. Like for example, one of them when she clears her throat, like that's a trigger for me.

Yeah. But my dad, it's like literally anything. He does everything. Yeah. Yeah. And it's horrible because , I obviously, I love my dad very much and I don't hate him at all. It's just there's this little monster in your head saying no, you do hate him because he's breathing.

[00:07:02] Adeel: No, I think we all understand that yeah, that that multiple, yeah.

The multiple voice, yeah. In our heads although I don. Call it multiple voices, cuz some they don't sound, some alarms with psychologists. But but yeah. Yeah we totally get what you feel. And just to get it, just to get for the record, like any other family members exhibit, any any misophonia as well it sounds like No.

Like you were really the only one usually. Not immediate family.

[00:07:25] Grace: Okay, gotcha. No. But there, there is a cousin of mine who I have been. Did have experiences when she was younger, but not nearly as severe. Oh, okay.

[00:07:35] Adeel: But you had earlier, before you even realized what it was or before you

[00:07:38] Grace: she's like, she's my dad's cousin.

. So she is older than I am. Ah, okay. Gotcha. Like I had been told this by another family member, like I've never spoken to her directly about it. Yeah. I see. I'm not sure if her, I had just heard from secondhand.

[00:07:52] Adeel: Gotcha. So then, okay, so then okay, so then yeah, things are proliferating.

It's, yeah, you're not eating. So at school then was it starting to seep into your school? It sounds like you're quite doing well, so it probably didn't affect your grades too much, but I'm curious kind of how start to affect your school life, maybe friends.

[00:08:08] Grace: It was definitely a rough time.

For the first year or two, I would say. Cuz I don't, I didn't tell anyone in middle school, I don't think like I didn't tell anyone at the school. Yeah, I, my first, the first time I told friends, I remember I was having a sleepover with two of them and they were eating pretzels and I just , I just broke down.

Like I like had my head between my knees, like I was just like, and they were like, what is happening? And I it took me a few minutes to finally get out and explain to them because I was so afraid of telling people because it's like people are just going to think I'm crazy and think that this isn't a real thing because I had never heard of it.

So I didn't know what was happening. So eventually when I found out the name, I'm like, people aren't even gonna believe this anyway. Cause nobody knows what it's,

[00:08:57] Adeel: so that's gonna be my next question then is when, yeah, when did you, how did you realize it had a name? Because that's not that long ago, so I'm sure the New York Times article may have come out by then.

[00:09:06] Grace: I think my my sister and my mom had done some research and I think my mom had told. , that this had a name and she's I think you have this. So did ki was a self-diagnosis. And then I went to a psychologist my freshman year of high school, which I was horrified to go to.

Like I had the mental health stigma in my head of I'm not crazy, I'm fine. Yeah. So I didn't wanna see a psychologist, but when I did, she did. So she knew about it or she was a psych? She did. Okay. Which she was the only person. Her and my current psychiatrist, I think were the only people, like mental health professionals I had speak, spoken to who knew about it before. I had been a patient of theirs. Gotcha.

[00:09:49] Adeel: Okay. And, all right okay. So you knew what it was you, yeah. So how did they, were they able to help? .

[00:09:55] Grace: So we did like the basic coping mechanisms. I think I was just, I didn't practice them as much as I should have. But like the saying, the alphabet backwards she told me to memorize like the I had a favorite episode of Teen Wolf and just like going through the events of the episode.

Trying to memorize like the entire. , 40 minutes of it.

[00:10:19] Adeel: So this is not during a trigger. Is this is something, an exercise to do? So

[00:10:23] Grace: I like it was doing a trigger. was during, it was supposed to be during a trigger. Okay. And okay. I, and you are like with coping mechanisms, you are supposed to practice like without the trigger and then apply it during a trigger.

And I don't think I practiced them enough cuz it just didn't really work well for me. And I think I got to a point, I saw her for on and off for a few years. And I think I just got to a point where I was like, I don't feel like this is helping me anymore. , and I had a time period where I went through like a dark time period of wow, nothing can help this.

Like . Yeah. Because there's just no like specialty for it or medication specifically. So I had a time period where we were trying to find different people and it was very frustrating cuz I would be going to these people and they would be like, I would have to teach them what it is. Okay.

Like, how can you help me if I have to teach you what it is? ? And then I found my current psychiatrist, and I've been with her since I was 17.

[00:11:19] Adeel: Oh, okay. And just going back to those exercises just for the record also. Was the point of those to just distract your mind? Yeah.

[00:11:26] Grace: It was supposed to like, take it away. Yeah. Yeah.

[00:11:28] Adeel: Okay. All right. But yeah, didn't work or didn't practice? I'd never, I hadn't heard of that particular type thing. Yeah. I was wondering did that come from maybe another was that borrowed maybe from another condition that your psychologist decided to use something like that?

Was that

[00:11:42] Grace: something? I'm not sure. I'm actually not sure. I just, I think I was frustrated with them because it was like I, she would tell me to use them during school. Say if someone was chewing gum during class and I needed to not pay attention to it, I'm like, the point is that I need to pay attention in class

So I don't wanna be distracting myself from class cause I'm, what's the point? Either way I'm being distracted from what's

[00:12:06] Adeel: actually happening. Gotcha. Okay. Yeah. Interesting. Okay. So yeah, not to do all that too much then but you're you eventually, yeah. It sounds like you found somebody when you were 17.

Yes. You muddled through somehow it seems school and whatnot. Again, what was your current psychologist ask you to do or,

[00:12:22] Grace: So I was actually prescribed antidepressants. When I started with her

[00:12:28] Adeel: for misophonia? Or was there a,

[00:12:30] Grace: yeah, it was supposed to be like, I was on I was supposed to prescribe Zoloft.

, so like, that's like anxiety and depression. Yeah. Because a lot of professionals associate me Sonia with anxiety. So that was supposed to like combat it a little. And I think it did work for a while. I don't know if it was really more of a placebo effect than it was anything else.

. But it just over time just numbed me completely emotionally. It wasn't really helping my that much. It was just more of like complete numb .

[00:13:03] Adeel: Yeah. Wow. Yeah. I don't have much experience with those those medications, but but yeah, I've heard yeah, I can just zap the emotion out and some people are like, I almost rather have the misophonia if I can just yes, have those feelings back.

Do you just feel like, like, I watch, I think there's a whole musical about that cone next to normal, but that's a digression. , okay. So interesting. So then so okay, you're 17, so you're also. You're looking at colleges, so at some point around that time you're like, hold on, I'm going to, I'm going to go to school and solve this.

As you were looking at things to pursue is this when you start to be like, I need to, I need, I want to pursue this as of a career?

[00:13:38] Grace: Yeah. I was definitely, I think early high school, I was already thinking about that. That's when I was more on the pharmacy track. I. And then I had learned more about it, like I said before, and I just didn't really wanna be a part of it.

So then I found, cuz neuroscience just really isn't it's not a prominent program at a lot of schools. So it was hard to find schools actually. Mm-hmm. That had neuroscience. And my school, actually, my freshman year was the first year of the neuroscience program. So I have to Has it traditionally

[00:14:09] Adeel: been something you get into in grad school, like May, does, do they, do, you may usually start off as science and then it's usually your grad thing

[00:14:17] Grace: or, yes, I think so.

Because their grad program was already established.

[00:14:21] Adeel: Yeah. That happens sometimes with like new programs. I think they always start off as they, even in engineering, they start off as a grad program. Then they if it's popular enough, then they make a whole thing out of it.

Anyways, I, another digression, but yeah and so when you were applying, did you mention misophonia? Cuz I know you have to write essays and all that business, but did you start to use that as a way to try to get in?

[00:14:39] Grace: That was my college essay actually was Okay. Was, and I it was a long metaphor of this tiny little monster in my

[00:14:46] Adeel: head.

Yeah. Oh, so did you write a whole narrative about it or you just, or you're just trying to describe it

[00:14:52] Grace: as It was just like me,

[00:14:53] Adeel: Yeah. Interesting. Okay. Yeah. Might opinion interesting. Reid, I don't know if those things are things that people like to share, but I've been, I've never had to write that for engineering schooling in Canada, but that's, yeah that's super cool that you, you obviously like, or organize your thoughts and and what was your reaction?

Did you get any feedback about it from the school or was it just your acceptance letter?

[00:15:13] Grace: Not No, just the acceptance letter. Yeah. I didn't get any feedback from the school. I remember. My, I took a college English class my senior year when we were writing the essays and we did like peer review and I remember one of my peers was going over mine and he really thought that I did a good job of explaining something that people had no idea about.

[00:15:32] Adeel: Yeah. No that's great. Okay. And. And then I guess oh, and then, yeah, maybe let's check back in with your family now as you're as you went through, obviously a bunch of so they're obviously somewhat supportive, but when they found out they had a name, they're taking you around to a bunch of psychologists.

Have they I don't know. Did their reactions evolve over time as they realize that it's a real thing?

[00:15:52] Grace: Yes, very much , , they definitely, once we found out there was a name, definitely went further on trying to help me. And it still took a while for there to be a complete understanding.

And not that there will never be a complete understanding where someone can have it, but you didn't even know, just like more of an understanding of how life looks for me. And it wa it's still hard, obviously. But. The effort that I've seen, is genuinely heartwarming. It makes me very emotional sometimes.

Like for example, going into college I needed a single dorm because I can't live with someone. Yeah. Like in this same, you don't have to explain

[00:16:31] Adeel: it to us.

[00:16:32] Grace: Yeah. Like obviously can't do that. When I applied for it, I had this meeting. It was just me and these people. My college on a Zoom and they had basically told me like, no, you don't need it.

Just wear noise canceling headphones, blah, blah, blah. And I'm like, alone in this call. So I'm like, okay, . So I get off the call. I remember I go downstairs, my parents, I say what they said immediately on the phone, they're getting on to the office hour Zoom calls for the college. doing everything they can because they know that I would not survive without a storm.

Yeah. So like that's just an example of like how much I know that they care about me and wanting me to live a life that isn't struggling every second.

[00:17:22] Adeel: Yeah. That makes you emotional to listen to that. That's, yeah. That's great. Did you okay, then once you got into the actually yeah, let's talk about, let's finish off high school.

Did you get any accommodations ever in in high school? Were I

[00:17:34] Grace: did, yeah, so I remember for a while I hadn't said anything and then towards the end of my freshman year, I went to my guidance counselor and I just broke down . Cuz I was just, I had enough of cuz I didn't tell anyone.

It's not like I, I didn't tell my teachers before the accommodations. I just like, how do you explain. To someone and have them believe you. So like a couple of my friends knew, so like they knew not to chew gum around me in class, like obviously not everyone knew, so it was really hard. I knew exactly where the gum chew were sat in each of my classes.

, I knew who each one was when they were absent, those were like the best days. So I eventually did go my clients counselor, and we did, it was hard to get accommodations because no one had known what it was. But I eventually did get a 5 0 4, so I was able to leave class if I needed to without having to say anything.

Like I could just walk out if I was triggered and I would go to the guidance office. And there. A lot of obstacles with that, especially with like testing standardized testing. I remember like my finals, they have like separate rooms for people with accommodations and the proctors would be eating and I'm like, like I'm literally in this accommodation room because of this problem.

But I had later found out, like much later in high school that my 5 0 4. basically just said I had anxiety, like they didn't clearly state. My dysphonia. So I also had a really bad incident in my my sophomore year I was in class and I only had eight kids in this class and we were doing a Socratic seminar, so there's only eight of us and we're just like in a small circle.

And I went to the bathroom real quick and I come back and two of my friends say to. Grace, you're gonna wanna leave. Our teacher had just given like permission for one of the students to eat their lunch during that time. And it's there's only eight of us we're in the small circle talking. So I said to the teacher like, listen, I have to go to guidance.

And they said to me, do you really have to? And I was like, what? Yeah. So I did like I left. In a rage. I was like, so done. I went home. I told my mom, yeah, my mom went off on all of my teachers, sent this five paragraph email to all of them and was like, I don't understand why you can't accommodate my daughter.

And she compared it. I thought this was a really good comparison. She compared it to an allergy. If a child had a nut allergy in your class, you wouldn't let someone have something with nuts. So I don't understand why you're letting this happen. because it's a danger to my health too. And people don't realize that because it just drives your mental health to the ground.

[00:20:22] Adeel: Yep, yep. You're right. People don't realize that yet. But yeah, it was, we're a lot. Yeah, a lot of us. Yeah, we're in the early innings of this whole thing, and yeah, it's just, I think you're right. It's when yeah, it gets roped in his anxiety as your 5 0 4 kind of stated as I was like nodding along with that.

I'm like yeah. Again, we're just shov, shoved under the rug or roped in with something else that people have heard about. , but yeah, that's great that you're, at least your mom was you, have you have an advocate in your family? Yes I do.

And in you know what, the stuff that you're all doing is hopefully we'll help the next person who comes through. That's what

[00:20:55] Grace: I was, I'm hoping is if someone goes to that guidance office and says something similar, they'll finally. What to do a little bit better than they had before.

My guidance counselor was amazing. He did a great job with accommodating me. If I like left class and I just need to talk to someone, he was always there. And he had later on told me like, I wish that I had, could have done more for you. Because I saw the amount of pain that you were in.

But he did a great. and

[00:21:25] Adeel: those teachers that initially, obviously were, didn't know what was going on and didn't treat it well. Did they, eventually, did you, eventually, did they eventually come around or did you ever hear about them or talk to them about Mr. Funk before you

[00:21:36] Grace: left? Yes, actually right after that email was sent out the teacher that, that had happened in their class had responded to my mom and that's when we found out that.

that it wasn't clearly stated because Oh, okay. They, he, they had said I, we, I didn't know that was what the issue was. Like we are just told that it's like anxiety and sometimes she has to leave.

[00:22:01] Adeel: Yeah. Okay. Do you wanna uh, I wanna have a bunch of get your calm stuff to, with this. There's a bunch of your, of here.

Do you wanna, just for the listener, just five oh fours have come up. Do you wanna just briefly describe real quick kind of what they are and how you went about getting.

[00:22:14] Grace: So it's accommodations that the school has to apply to like kind, it's like a file that you have that is sent out to all of your teachers at the beginning of each year describing what your situation is and what not only it's complete depth, but just what is needed to be done.

In order to accommodate the. That you're facing in order for you to be able to have an equal shot at an education as everyone else.

[00:22:42] Adeel: So and this is at the federal level? This is the US ada Yes. Require. Okay.

[00:22:47] Grace: Yep. Yeah. That when I went to my guidance counselor for it, I think again, some of this time periods are just like completely blocked out from my brains.

I think were just so horrible, but. , I think my parents had to come in and we had a meeting with someone at the school who like does all of the 5 0 4 s like they write it and send it out for it to be like made official.

[00:23:12] Adeel: Gotcha. Okay. Okay. Interest and yeah, this one is for people who are, might be new.

So when I said US ada, ADA is the American Disabilities Act, I think. And so it's, yeah, it's something. At the national government level that gives people the right to get accommodations for their disabilities. And a lot of I don't wanna say a lot, but at schools you can use that to get accommodations through this, what's called a 5 0 4 plan.

In some cases. Cool. And did you hear about the I'm wondering if you heard about that, that, I don't know if you heard about that recent lawsuit. Kentucky or Tennessee, I forget where a high school student has had sued her school for not providing accommodations.

[00:23:49] Grace: Oh, I think I had seen that on your page.

[00:23:51] Adeel: Yeah. Yeah. Gotcha. Yeah, I'm hoping to have the lawyer on at some point to talk about it, but yeah, that case unfortunately got thrown out at some point. I think for some procedural or ju jurisdiction. Reasons I'm gonna have to talk to him again about that. But but yeah, that was a great attempt and to try to get accommodations.

I think the issue was in a very difficult situation. She was not getting the support that she, we all legally are entitled to. Okay, so I think we've talked enough about high school stuff, and a little bit of college. So how, yeah how's life been and has this how's this, how's the program been?

Have you been able to. Bring up misophonia at all make any networking connections. I'm curious how things are going now.

[00:24:30] Grace: As far as misophonia, the only thing that, nothing really with the program I've been able to do yet cause it's just, I've only been at like, intro level stuff. So like nothing, I've really not, haven't been able to do much.

But before, during the pandemic before I got into college, I had reached out to, I looked up. who had got federal funding for me, research and , there was someone at Duke who had, so I reached out to her just asked if there was like any way I couldn't be involved virtually or anything. And she did get back to me.

She said that because of the pandemic, they can't have like anyone else on their project at that point. But I guess I did get my name at least out there a little bit for Estonia, but, On more of a personal level, I try to spread awareness. Like I said, early high school, I used to be so afraid to say something, but you can meet someone on the street now and be like, yeah, I have this thing.

Because I just, people don't talk about it enough, like nearly enough. And I had, I've shared stuff on social media before and. I genuinely don't want it to be this thing where people feel bad for me or feel like they can't like breathe or eat around me. It's more of a, if someone else has this, like I had people reach out to me after I posted about it and say I didn't know this had a name.

Yeah. And I didn't know that this was a real thing. Like my family has thought that I've been crazy this entire time. And that's what I, is important to me is being able to get that out.

[00:26:05] Adeel: Yeah I agree with you. I've thought of, many times about what's, what are my goals for this podcast?

And it's actually more, it's less it's about awareness, but it's awareness more for finding other people who might not know it has a name and are just suffering in silence. Yeah, cuz I think just knowing sometimes when you're in a trigger in a situation, like sometimes just knowing that other people have it or that you can reach out to someone via text is, can make a big difference. And yeah, that's and at your school, have you, I don't know if you've you heard PAs, Natalie, shout out to Natalie, started a group at U UCLA when she was a student there misophonia support group. Have you thought about maybe doing something like that at where you go to school?

[00:26:38] Grace: That's great idea actually. I hadn't. I hadn't really thought about that because I think in my head I've always been like, it's so rare, but it's not .

[00:26:48] Adeel: Yeah. I mean she only, I think a few people, but I think people came because they heard about cuz it was basically, every university has like student like chess club or whatever kind of student groups and there's always a directory and then there's maybe a day when they all have booths or whatever.

And so that, those are kind of opportunities that you can. Get the name out there and and yeah. Yeah, that might be an interesting idea to try out. Yeah. No, it's very cool. And so you are now, more open about it. Have you met, sounds like you, you have met more people that have that have missed Aon, including strangers, I assume.

And so have you building a little network of missed phones locally?

[00:27:22] Grace: Just not really. Not that many people actually. Yeah. It's just more of. people that I like went to high school with Who? When I posted after, had reached out to me and were like, mm. or people there are people that were younger than me who were still in high school.

[00:27:37] Adeel: Yeah. I like at the high school that you went to?

[00:27:40] Grace: Yes. Yeah. And I like made it clear to them like, listen, someone knows about this at our high school. Cuz I went through it and you can get the help that I.

[00:27:50] Adeel: Yeah. That's great. That's powerful. Yeah. Cause you didn't have that just have imagined, imagine someone had reached down to you and helped you out, that would've been a huge, yeah.

So that's yeah, that's a huge impact. Yeah. So I guess, and so you're coping mechanisms then, now that you're you're in college there, is it still the typical Getting outta situations or wearing earphones or is there anything you're assume you're not still rec reset me alphabet backwards.

What are some of the things that, that you're, that you have been effective for you?

[00:28:15] Grace: I'm a very flight person, . I definitely, oh yeah. Walk away most of the time. When it comes to lectures and stuff like that. , that's when I have a hard time.

[00:28:25] Adeel: Are you a front of the room or back of the room?


[00:28:28] Grace: I'm a back of the room person. In high school I was a front of the room person or you're the door person. I'm like, I'm, I've been back of the room. And I don't even really know what's related to me phon. I think that's just like my preferred spot. But in high school I was front of the room because of my mis phon.

I'd like to, I don't wanna see anything. Yeah. But I think it also helps me in the back of the room in college because there are, I could like still pay attention to what's going on in class, but there's so many little distractions, like someone playing solitaire in front of me and I can focus on that instead of so much.

. And not that it blocks it out at all, but it just, I think high school is such a small Yeah. Contained area that you feel trapped and. College. I know. Like I think also knowing that I could walk out at any time and nobody would care and it's also like comforting. Yep. That I have that freedom and no one would no one would ask anything.

No one would judge me for

[00:29:21] Adeel: it. No. No one's taking any attendance. You can, yeah, go outside and get some fresh air anytime you want. Yeah. Very cool. Have you thought about, so you know, you're in college. Are you looking at like following the research that's happening? Obvi, I'm sure you're familiar with the Dr.

Kumar studies and what his group is doing. Are you thinking about what you would want to study or what you would want to research?

[00:29:40] Grace: So I actually did, I took a like a research articles class. Two semesters ago, and we had our final presentation, we had to pick an article, and I actually chose that article about the mirror neurons.

Yeah. The motor basis. Yeah. Yes. And not that I I'll basically honest with you, I, it's so beyond my understanding still. I, it's very interesting to me though. And it was, it's amazing to hear that there's something like a step being made. Because before that it was like no one knows anything.


[00:30:12] Adeel: wasn't a lot of interesting. Did you hear the the Mercian interview that I did, because she was one of the lead authors on that paper. Oh, no, I didn't. Oh yeah, you should listen to that. And actually, if you want me to connect you with with that group, I can, I. I can do that maybe by email or something later, but yeah, I had Merced Orian on the show sometime last year right after that paper came out yeah, it was a good like hour and a half getting into it and not getting, too into the weeds, but at a, she explained it really well and talked about like some, maybe some future directions, which, so it was a fascinating episode. You should definitely, I think, listen

[00:30:45] Grace: to, yeah, I will definitely listen to it.

[00:30:47] Adeel: Cool. Okay. Yeah. So you, okay, so you did that. A summary of that paper. Yeah. Did you get any ideas f from that, that you of things that you know maybe resonated with you that you wanna, that you want to see studied further?

[00:30:58] Grace: I actually , I've had a little bit of a major crisis in the past few months. Just. , I took very difficult classes that I was like, . I don't know if this can be for me, but it's so frustrating because I want to make an impact. Yeah. So badly. So I strayed further from the idea of research and I'm more looking towards, cause I wanted to go to med school I also realized that might just, might not be for me I'm looking more towards PA school. . Cuz I do, I really enjoy like direct patient contact. Like I really do enjoy that aspect of things and I think research is just two behind the scenes for me. But it's, I think it's gonna be more for me, more of following it closely and me being able to understand, yeah.

The church more than, it will be more of me being involved in it, which was like a really hard thing for me to. get used to. I guess just the idea of me not being directly involved. Cause I just don't think I would enjoy it. But I do wanna have that impact. So it's of frustrating, but I just don't think that the research would be for me.

[00:32:07] Adeel: Yeah. Hey, I think it's early days and I think there's many ways to help. And yeah, I think the, just the fact that you're. Thinking about it and we're revising your plan. I think that's and it's not like you're young, it's not like what you do next year or two years is gonna be, you're gonna be stuck doing that forever.

You're gonna meet new people, you're gonna be exposed to new ideas, and there'll be new research coming out. Yeah. I wouldn't worry too much about that. And I know you're gonna make a big impact whatever you do. Yeah that's. So yeah. Yeah, I whatever you do, I hope you at least stay in the MyPhone your track

[00:32:36] Grace: Yeah, I definitely

[00:32:37] Adeel: will if possible. But, whatever you wanna do on that. Cool. Okay. And oh yeah, we're getting, yeah, I'm getting, closer to an hour-ish. Yeah, we talked about some of your coping mechanisms. How has did we talk about how the co your college, we talked about high school, but how's the college been for accommodations?

We talked a little bit, obviously about lectures. You can run out of there whenever you want. But have you needed any accommodations for like midterms or exams, things like that?

[00:32:59] Grace: I, so because my freshman year was all online, like I didn't really need Oh yeah. Any accommodations.

So this past year was me getting. into the hang of things, like just trying to figure out like what accommodations I might need. I didn't, I found that I didn't really need many, but there was like one exam I remember I was in a lecture hall and it was that time of year where everyone's sniffling.

And I was, I don't know if I would've done better on the test if it weren't for that, but that was when realized oh, I really. Try to find accommodations. , but by the time, like that was like towards the end of this past semester, so by the time that I had realized that it was just like too late to do it for that semester.

So I'm, but I'm definitely planning on doing something for the fall to see if I can get like separate room accommodation or something like that. It's, and I think college is much more. Flexible with like you being more specific about it. Like what your specific needs are. I've heard that they're good with if you need to be completely alone, you can be completely alone.

Cuz high school was just like, you're thrown into the a room with everyone who has accommodations.

[00:34:07] Adeel: Yeah. It should be more flexible either. It's just a lot more rooms available. But I think they've in, yeah, in college I think people have heard a lot of different things. They get people from everywhere.

Yeah. Okay. Interesting. Yeah hopefully that all works out. And going, maybe going, like going back to your family a little bit. So your, it sounds like your mom's kind of being a big advocate, your dad was your biggest trigger. How is, how has like how's he been dealing with all this?

[00:34:30] Grace: It's of hard to tell because I think when it comes to me responding, everyone's kind of focused on how I'm feeling. In the beginning I don't think it was as much, near as much like that. It was oh, this is annoying for everyone. But now it's definitely more about me.

So I don't really hear much about how everyone else deals with it, because I do know that it is a huge thing and. For a very long time. I did have like very dark thoughts of wow, this would be so much easier. , like this house would be so much easier if I weren't here because there wouldn't, they wouldn't have to like worry about literally breathing.

Oh, okay. Okay. And so that was just like that was

[00:35:08] Adeel: a hard time coming from a sense of

[00:35:09] Grace: guilt. Yes. Yeah, there's been a lot of guilt because, . It's just like I, oh, I forgot. I had read this article recently and it was very well written about, it was written by some of these phon and wonderful lines with something like, how do you hate your father for breathing?

. And it was just like that one hit. Like it just, the way she worded like really hit me. Because it is that feeling of like, why do I hate someone for being. For making a noise. So I know that it has definitely affected him. And as I got older, I really try to I try to make it clear that's my myON, it's not me.

[00:35:52] Adeel: Yeah. Yeah. I'm wondering if he's here. This, yeah. Ionia is interesting. I dunno if it's interesting, but there's many layers to it. There's obvious. The misson. Then there's the guilt on your side. The guilt may be on his side or, and then the, there's all these corollaries. Do you get a sense for, is he able to understand that it's not really in our control and that's not a personal thing?

[00:36:14] Grace: Definitely. That was definitely a gradual, yeah. Yeah. But now definitely. It is like very understood that this is something out of my control.

[00:36:23] Adeel: Yeah. Yeah. No, very cool. Yeah. Grace, yeah. I don't this Yeah. Super interesting. I, like I said, I am exciting that you're pursuing this and I hope more people pursue this.

Who enter the field of neuroscience or anything, neuroscience adjacent. Any, yeah anything else you want to share? Whether it's tips or any, stories you've had in the past of successes or failures?

[00:36:43] Grace: One success that I think I, I wanted to share was at the end of high school, I was given an award from my county.

It was like the youth spirit of success. And it's awarded to kids. Are able to excel in school while facing a medical or physical difficulty. And I had been nominated by someone at my school. I'm not sure who it was. I think I know who it was, but I'm not told , . And so that was a huge thing for me because looking back on high school like it was.

It was definitely hell with Menia every day was, there was a different noise that made it harder for me to focus in class, and it was also just like embarrassing when you walk out. There would be days where I was crying and it was just like I would just be walking out and I'm like, no one knows why I'm walking out and just crying for no reason.

[00:37:46] Adeel: Would they come up and at least try to support you or was it just like everyone's doing their own thing and you're standing there crying?

[00:37:52] Grace: It was so in school, once I got the accommodation was like if I started to get upset, like I would leave. So the people in the guidance office like started to know me and not even, I don't even know if all of them necessarily knew what my issue was, but it was kind, they had an under.

Like when I came into the office and if I was like very upset, I would talk to someone. I also at the end of high school, started speaking with the school psychologist too. She was very helpful, like if I could just go to her when I was like, genuinely physically upset. But.

I think it was just a very different experience being acknowledged for it. Because it was some, it's something so invisible and just like being told like, Hey, you did a good job getting through this

[00:38:46] Adeel: because yeah. It must have been overwhelmingly a good feeling.

[00:38:50] Grace: It was because I never thought that.

anyone would acknowledge it besides like people who were close to me and knew everything. But getting it from an outside perspective Yeah. Was like, wow, this is and I'm not like , I really don't mean to toot my own horn, but it just, no, you deserve it. Yeah. Like I was top 10 in my class, like I did very. academically, but that took a lot. , like a lot of work because of what was going on in my head during that time that no one else saw. Yep.

[00:39:31] Adeel: Yeah. People don't, yeah, people don't see what uh, yeah. What this does and what, and how we deal with it. That's great that you were and well deserved acknowledgement.

Did the, did that award mention misophonia or was it just in general?

[00:39:42] Grace: No, it was just a general, because o other kids from other school districts also received it, so it was just who won it and what school they were at. But but it was it was really good to, to. Yeah. Cause I just think that from an outside perspective, it's just like, why is she crying?

Yeah. Yeah. And even that was another

[00:40:02] Adeel: thing. There's a lot of that. Is that did you, part of what comes with that is on top of the guilt is like maybe some shame, because Yes. Do you wanna maybe briefly talk about that? I wanted to end on a positive note, but Yeah. I think it's good to at least talk about this stuff too.

[00:40:14] Grace: Yeah. I. a lot of like school there was shame just because it is embarrassing for obviously if, especially people don't know because it's like they just as they could assume anything. But I remember also going out to eat the amount of shame I had there, because there for a few years I wouldn't wear headphones, but it's I would still cry like in restaurants.

, like I would get very upset. And also wearing the, he. Sometimes when a waiter or waitress would come up, I wouldn't hear them, or yeah, I thought from an outsider's perspective, I just sound like I just looked like this, like annoying teenage girl who was like ignoring everyone.

But in reality, like I just didn't want to hear anything. Yeah. So like that was definitely, that carried a lot of shame. And even like I was raised Catholic and going to church too. Because it's just so quiet. Yeah. That you hear everything. And I remember there was this one Easter Mass a few years ago where the, there was a family sitting in front of us and their toddler was eating Cheerios.

And I sat through the entire hour. I was bawling my eyes out the entire time. But I sat there and that was, it's like I shouldn't have to sit there and struggle. But it also was like a certain amount of pride that I was able to do it, but still shame because I was like sitting in a church bawling my eyes out in an Easter mass.

[00:41:35] Adeel: Yeah. The layers of misophonia feelings all at once. That's, that that's seen just sums up misophonia. Yes. Oh, wow. I'm sorry you had to deal with that, but yeah. That's quite a complex situation. Yes, . Yeah. Yeah, and obviously raised being raised Catholic guilt is a stress pillar of Catholicism,

Yes. From what I hear. Yeah. Super interesting. I'm sure a lot of people will relate to that and everything. We've heard maybe not as much on the research side, which is exciting. I think hopefully you can of trail blaze a little bit. Yeah, and I, yeah, I'd love to maybe connect you with some other neuroscientists that I know that are currently in the field.

Yeah. But yeah. This is great. Any any last words that you wanna share before we sign off?

[00:42:17] Grace: I guess just in general especially if you're young and experiencing this I promise it gets better because I think a lot of, I, for a very long time thought there's literally no way gonna get better.

But Does, and I think especially with the awareness that we're spreading, I think it will definitely get.

[00:42:37] Adeel: Yeah. That's an important message that that I, yeah. I wanna share on people who come on, want to share, is that it could seem hopeless, especially as the number of triggers really increases.

Yeah. It could seem like if you draw the line, it could seem like, oh my gosh, I'm gonna get overwhelmed by the time I'm, X Age. Yeah. But, yeah, it gets better for various reasons. at some point you'll find people who can be allies and support you and. You're older, you can you have more agency like in college to move around and or later when you can, have your own place.

. So it, yeah, there's no cure. It probably won't be one for a while, but, uh, I think, you'll hopefully get a sense of control back. Yeah. Important message to chair. Yeah, grace. Thanks. Thanks again for coming on. Thank you for having, Thank you again, grace, for coming on to help raise awareness, sharing your story, and I wish you the best in trying to solve this condition.

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