Episode 058 - Shaking It Up w/ BreAnne Hamby & Lyra Thompson

Guests Arrive, Discussing Coffee and Introductions Hello and welcome back to The Unseen Perspective. We are your host, Mara Jane and Mary Flowers. Hello. And today we have guests again. We haven't had guests in a while. When's the last time we had a guest? Christmas break, Thanksgiving. Brickman. Yes. Yeah, it's been a while. Speaker 2 Yeah, 'cause we had Lyra and Kelly on. Speaker 1 Yeah, I remember that now. My brain isn't. Yeah, functioning on all circuits. Yeah. So. So Lyra's back, but. Speaker 3 I she brought a friend get rid of me. Speaker 1 Yeah, she just keeps coming back. So can you introduce your friend to us? Speaker 3 Yeah, she can introduce herself. She's an independent woman. Oh yeah, an. Speaker 4 Independent woman. My name is Brianne Hamby. Speaker 1 Hello, Good morning, podcast. Speaker 4 Thank you. Thank you. Speaker 1 Thank you for for asserting your independence. Speaker 4 Of course, of course. Speaker 1 So how are y'all doing today? Speaker 4 Pretty good, pretty good. I got my coffee. So we're percent. Oh yes. Speaker 3 I got my massive soda that she bought me that I did not expect it was going to be the largest size. Speaker 4 It is pretty big. Speaker 1 I'm jealous. Speaker 3 Like the size of my head. Speaker 1 I want soda well. Speaker 4 You do have a pretty big head too. Speaker 1 Dang throw in shade Today I I I had a coffee and I finished it in 20 minutes. So now I'm kind of scared for my health. Speaker 2 I have coffee, yeah, it's kind of cold 'cause I made it, 'cause you did a while ago, and then I got busy and I didn't finish it. Speaker 1 Lame. I either drink mine drinks way too slowly or way too quickly and I find a balance. I. Speaker 2 Always drink them way too quickly. Like especially if I get if I buy coffee somewhere no matter if it's hot or cold. I realized I just drink it really fast. Speaker 1 I mean, well, with hot coffee, it's only like the perfect temperature for like a little bit. Speaker 2 I don't know, my Tumblr keeps things at a lovely temperature all day. Speaker 1 Maybe that's what I need. A good That's a good thermos. Speaker 2 Yeah, when I drink coffee out of my Tumblr, it takes me longer to drink it. Speaker 3 Alright, we're here too. Speaker 1 OK, guys. What do you guys? Speaker 2 Use to drink coffee? Yeah. How do you like your coffee? Speaker 3 I don't. Speaker 4 Oh and then she she doesn't drink coffee. I I also have like a thermos, but it's in like a mug because I really like mugs. So it's a bug shaped 10. Speaker 2 I love that. Speaker 4 It fits in all my cup holders and yeah, it's actually nice. Speaker 1 Yeah, my water bottle does not fit in any cup holders. Speaker 3 So should we talk about why she's here? Speaker 1 Yes, yes, but you didn't want to talk about coffee. Speaker 4 Hey, I don't mind talking about coffee. Coffee is good. Exactly. Coffee is the reason we're here, right? Literally. Speaker 2 That's the reason I'm not. Speaker 1 Asleep right now. The reason we get up in the morning. Maybe for you. I don't really like coffee. I just had it today because I got up really early and I'm going to have a long day. Speaker 2 I like coffee a lot. Speaker 1 Yes, I know, but why are you here today? Yeah. Speaker 4 But I seem to talk to you. Speaker 2 Well. Speaker 1 About coffee. Speaker 4 Well, maybe about coffee, I mean. But also I have a disability, so now we're disability buddies. Yay. Speaker 2 Would you like to talk about it? Speaker 4 Sure. Speaker 3 Would you just? No. Speaker 1 No, let's talk about something else nice. Speaker 4 I like talking about the coffee. I don't know. Oh, I don't know. What do you want to know? Speaker 2 Well, what is it and how does it impact you? BreAnne Shares Her Experience with Essential Tremor So it's called a central tremor and basically it means that like I shake all the time, like my hands, my voice, my, you know, arms, legs, toes, whatever, all of it shakes. How does it impact me? Lots of day-to-day things I think that a lot of people don't think about, like writing, eating, pretty much anything, especially that uses my hands, you know, going up downstairs, stuff like that, yeah. Speaker 1 So do you have any accommodations that you use in college? Speaker 4 A lot of the time, like especially with like writing, I like put my hand down like on a table to kind of like stabilize my hand a little bit. It doesn't make like the tremors go away, obviously, but it at least helps kind of minimize it a little bit, kind of stuff like that. Just finding new ways to grasp things and and sometimes unfortunately just having to ask. Speaker 2 For help with any. Speaker 3 Official written accommodations though, when you were right. Speaker 4 No, I probably should have asked though, because there was definitely like one class. You know you there's always like the disability statements in a syllabus or like if you need help just. Speaker 3 I kind of get a little laugh out of those. I read those, yeah. But. Speaker 4 I don't think I've ever actually used one. I probably probably should have because like I had this one class where the professor was kind of hard and so I didn't really want to talk to him about anything. But he had a rule. You wouldn't want to have computers. And for me, typing is, although it's still difficult, it's easier than writing. So I'd like to take my notes on computer, but he doesn't allow computers. And so I had to like write in class on it like a notebook. And it was always the worst because I had a class before that and it was a theology class and I'm really passionate about theology. And obviously if I'm passionate, I'm excited, my heart rate is up. And if my heart rate is up, my tremors are far worse. So I always come into this class and I wouldn't be able to like write like my notes were terrible. It was, it was probably one of my least favorite tremor experiences in college was just having to go to that class because I couldn't ever actually take notes. And it was a class I definitely needed to be taking notes for. Speaker 1 Oh yeah, that's. Speaker 3 But she survived. She graduated. Speaker 4 I did, I did. And I, I think I got an A in that class. I don't know. I literally to this day don't know how. Speaker 1 Yeah, I've had experiences with like, not wanting to advocate and like just kind of try to do things for myself. So I used to do worksheets, like with my phone. I'd use my phone as a magnifier and bend over super far and like move it across the page. That is not an ideal. Speaker 3 Actually you just got to get yourself a page magnifier that like you just flip it up and it sits on the table and you can move it. I have that thing that is great and I use that for reading like print books every time. Speaker 1 See what I want is like some kind of magnifier can like attach to my glasses and like flip it over my left eye because that's the only one I can see out of. So I can just like read books and do worksheets and stuff without having to have like of something like a handheld magnifier or like a CCTV, but I don't know if that exists. Speaker 2 I don't know. I usually use my phone or get like digital stuff. Like I had a professor as well that technically didn't allow digital notes and like she wanted to choose like no technology in my class. So I had to go up to her and be like, so about that. Speaker 3 Yeah, that's one of my, one of my professors this year is like too early, like not too accommodating. I don't want to say that, but like it's like she's asking if I need. She's like making exceptions when I don't need them. And it's like super sweet where she's like, oh, if you need to type yours, if it's like a handwritten thing, she's like, oh, if you need to type yours, that's fine. You totally can't. I'm like, I can handwrite it. Yeah. Speaker 2 But I surprisingly write my notes by hand. But I. Speaker 3 Love taking. No, I prefer taking notes over or like in typing still in general, but like for things that are specifically handwritten, it's like, I don't mind doing that. I can, yeah, I can still. Speaker 2 Write. Speaker 1 Well, I love writing like handwritten stuff, but my issue is like just can't read it back. And so I'm like when I need to go back and reference my notes, which I've actually have been doing more lately, I can't do that with handwritten notes. Exploring Tremor Spirals, Depth Perception, and Art Creation So I have to type them. And it's faster in the moment also, yeah. Speaker 3 Can you read your handwritten notes? No. Speaker 4 I did that. Like, sometimes, I don't know, there's sometimes where my handwriting is like really good, especially if it's a day where like my tremors aren't that bad and I'm like, Oh yeah, I can read that. And then sometimes I'm like, I have no idea what that says. Literally, it's so bad. Like I sometimes try to write in cursive 'cause sometimes it's easier because you know, like your pen essentially doesn't really leave the page. Speaker 3 Looking like your spirals. Speaker 4 Yeah, it's easier for me to write, but it's not necessarily easier to read. So do you. Speaker 3 Wanna talk about the spirals? That's true. Speaker 4 I mean, yeah, so one of the tests that they do for tremors is you have to draw a little spiral and there's different. It's kind of like a I guess this is an interesting comparison, but it's kind of like an earthquake scale. Depending on how shaky your spiral lift is, it kind of determines how bad your tremor. Speaker 1 Is what kind of tremor you have. Speaker 3 And so if you got, I could maybe send pictures if they want for yeah, podcasts. Speaker 4 Yeah, I mean on my page you can see like a whole. Speaker 3 Bunch of them shout out to her Instagram like all three of them or whatever. I have too many talk about all of them or. Speaker 4 I don't need to talk about all the one for my tremor page at least is at tremor vibes Journal. So if you wanted to like see some of the spirals, I definitely like post them and I try to like kind of daily or semi daily post like my tremor spiral for the day or whatever. So But yeah, some days they're really bad and I'm like, I have no idea what that is. It doesn't even look like a spiral. And then some days I'm like, oh, no, that looks perfect. Yeah. So. Speaker 3 That's another interesting thing that we've talked about that's different for like us, our blindness is like stable, whereas yours is like your condition is different every day pretty much. Speaker 4 Yeah. And it kind of, it's interesting because it kind of varies. Like so how I usually explain it to people is like there's variance year to year and then there's variance month to month and then variance week to week and then day-to-day. So like on the whole, I would say like this tremor in 2025, that tremor year was a little bit worse than the previous year. But on the month to month, it kind of varied. And then obviously week to week, day-to-day kind of varies too. So just depends. Speaker 1 Yeah, that's interesting. But when you were talking about the the spiral test, I was thinking, oh, interesting little tests for disabilities. One time I had to look at a pen or highlighter what or whatever and put the lid back on it using my vision. Oh, gosh. And so this sounds like a, a very simple task, right? Well, my, yeah, my depth perception is atrocious. So I was trying to like. It took me like several tries to get this lid in the right place. Speaker 2 Wait, were you allowed to look at the highlighter though? Like as you were putting the. Speaker 1 Lid on. No, I had to look at the highlighter. That was the problem. Speaker 3 Because if we did it by fuel, we could do it fine. Speaker 1 Yeah. Speaker 4 Wait, I kind of want to see you do this now after. Speaker 1 I No you don't. It's so embarrassing. Speaker 3 It's like if they or they're like, oh, extend your arms with and put two kind of put 2 pencil tips together and it's like an inch behind the other. Speaker 4 1. Speaker 1 Yeah, my depth perception is so bad. Speaker 3 Yeah, I found out one time, like Callie and I were doing ChatGPT research. So do we actually, do we have depth perception that's just bad, or is it a thing that you either have it or you don't? Yeah, And it's like you either have it or you don't. There's not like you can have some depth perception. So we don't have any. Well, I don't know about you guys, but I don't. I would assume I don't have any, but I just like that doesn't mean I see the world in 2D. Speaker 1 Right, obviously. Speaker 3 Shadows and shapes. Speaker 1 And textures that's. I've always wondered that because like I always say, my depth perception's bad, but I don't really have depth perception because I can only see out of one eye, and when sighted people close one eye, their depth perception goes away. So that's kind of just like me all the time. Like I know drawers use that technique to help them see their drawings better, but I'm like just naturally like that, so maybe that's why I'm good at drawing, I don't know. Speaker 3 Hey Segue Art is an artist. Really. Speaker 4 Yeah, which is ironic considering I have shaky hands, but I don't know, there's it's kind of a fun, especially when I went through college because, you know, I had this professor who I love him to death, don't get me wrong, loved him to death, but he did not care at all that I had tremors. He was like, yeah, yeah, yeah. I called, but he understood like, OK, you have this thing, but don't use that as an excuse. Which actually was really nice because it kind of like pushed me to not like rely on, oh, I can't do this because of my tremors. So I kind of learned to push past it. But sometimes it does make things hard because straight lines do not exist in my world. Speaker 3 You can just. Every piece is just. This is just an abstract. Speaker 4 Going. Speaker 3 Against the status. Speaker 4 Quo because I literally just did 3 abstract pieces yesterday that are all like line work but I can do real art. Okay, not that abstract art isn't real art, but it's just harder. It takes a lot more time weighted. Speaker 3 Thing for your hand, you use that a lot. Speaker 4 I do if I'm sometimes if I'm doing drawing, it depends on what I'm what I'm actually making. Like if it's if it's fine then like have a little shakiness then I just won't use it. But it just depends. Like if I'm painting, I don't think I've ever used it while I was painting 'cause I don't want to get paint on it. Speaker 3 Oh, she actually made the cover for Lost and Crowned right here. Cover artist. Speaker 1 So wow, very nice job, yeah. Humorous and Challenging Anecdotes with Weighted Silverware Thank you. I have two copies. Speaker 3 You have two Oh. Speaker 1 Well, I I got an extra 1 because I was going to give it to people. Oh, so they can read it? Speaker 3 So out of the like 8 or 9 copies we've sold, four of them are my parents and two of them are you, you're. Speaker 1 Welcome. Speaker 3 Thanks. Appreciate it. Speaker 2 I was going to get my friends some for Christmas but I forgot and by the time I remembered it would have been it was like close to Christmas like Dang it. Speaker 3 I forgive you, it's next Christmas. Speaker 2 Exactly. And their birthdays. Speaker 3 Or yeah. Speaker 1 Something to look forward to. Speaker 2 Exactly. Surprise, guys, I bought you a book. A very good book. It's a niche book too. Yeah, you don't know. Speaker 3 The local authors I. Speaker 2 Guess the authors are my friends. Speaker 3 So I'm not biased or anything. Speaker 4 No, you still. Speaker 3 Haven't read it. Speaker 4 I found myself. It was wonderful. Speaker 3 Not that you can see it, no. Oh wait, I can see it. I know if I didn't know what it looked like I wouldn't see it because I know see context clues and educated guesses. I've been telling people recently about. I like been thinking more about. Speaker 4 How? Speaker 3 Being visually impaired is a lot of just relying on is just making educated guesses, context clues. And most of the time you're correct. So sometimes you're completely off and you're like trying to buy something at the store and you know what the like the cut, the brand look, what the logo kind of looks like. And you're like, oh, look, there it is. And it's something to like the same font but completely different. And so it's like I could see if I know what the book looks like from here, I can be like, yes, there's the blue and the green and like the vague people shapes here. But if I didn't know, I wouldn't be able to see that. Speaker 4 It's the only one that's actually displayed on the shelf. Everything else is like, you know, actually put in there well. Speaker 1 That's. Speaker 3 So you're standing there, you're showing off your own work. Speaker 4 I am, I am. It's a shameless plug for all the people who don't come to my house. Speaker 1 Fair enough. I wish I had like a bookshelf full of books but I can't really read them so. Speaker 2 Books are expensive. Speaker 1 Yeah. Speaker 4 Books are expensive, but they're worth it. So libraries. Speaker 1 True, true. I love libraries. Speaker 3 Or like used book websites. Yeah, like Thrift Books, thriftbooks.com. Speaker 2 Yeah, Mara, don't go to the dusty bookshelf and spend. Speaker 1 The no no never again. I love the dusty bookshelf though. But. Speaker 2 They're expensive even they're caught. I got like a medium sized like not even like a large coffee. I think it's technically they're large. It was $7.00. Speaker 1 I thought it was $8. Speaker 2 Oh yeah, you're right. It was $8. It's so big. And well, it wasn't even that big. It was. Speaker 1 Yeah, it was like a like a regular size. Speaker 2 Didn't even have a lid. Speaker 4 It's like an extra $2.00 for a lid, right? Yeah, probably. Yeah, it's. Speaker 3 Not a lid for you would be like it was terrible. Speaker 4 Awful. Yeah. I, I always have to have a lid or like even honestly, even the cups that I have at home, if, if it doesn't have a lid, I don't feel it past like halfway because there ain't no way. Speaker 3 Or do you want to just talk about all the funny little moments from like having like Trevor moments? Speaker 4 Yeah, well, the first one that I'm like, I'm genuinely traumatized by is in high school when it first started because I was diagnosed when I was 15. And obviously I'm like straight in the middle of high school. And I had like a best friend. And then there was like this guy that I was interested in the time. And I remember it was we were sitting at lunch and it was like a little Christian School. So it was really informal. And so we, you know, I was sitting up on the counter eating my lunch and like, my hands were shaking like crazy. And when my tremors had first started, it was really severe for the first couple of years. And so I had a really hard time, like feeding myself. And so I remember I had like this little cup of water and I spilled it all over me in front of everybody, and it was so embarrassing. So I'm like 15. And of course, that's a time when you're like super self. Speaker 3 Conscious, right Everything. Or did you know that? Speaker 4 I think that was after I was diagnosed, yeah, 'cause I realized that it was starting in like July, August, 'cause my best friend actually noticed me shaking. And then I think it was a few months later, because by November I had talked to my parents. It was like, yo, something's going on. And so yeah, I think it was after, but filled it all over me. But it was actually really nice because after that, and I kind of explained to people what was going on. People were actually super helpful. And like I remember, I'd be. Speaker 3 A lunch. There's a way to educate it. Speaker 4 Well, I guess, I mean, I think at that point, I didn't really know. I wasn't really caring about educating people at that point. I was just like trying to educate myself. Yeah. And trying to figure out how to exist as an independent person, especially when when I wasn't like, at home and stuff. But it was nice because people after that were super helpful. Like I remember my friends would like, peel my oranges and stuff for me. But yeah, even after that, I still had issues. I remember. I guess it was my freshman year of college I went On this date with this guy and I 100% like I got a brand new coffee. We were walking in the door to the where we were going to hang out and I spilled the brand new coffee. Hadn't even taken a sip of it all over the carpet of the dorm lobby. It was terrible. Oh no. Speaker 2 That's awful. Speaker 3 Do you want to stick to your recent thing with the weighted? Yeah, OK. Speaker 4 So I just on my page, I just went on this whole rant with, with my followers about weighted silverware because it's super helpful to like especially me for soups and stuff like that. It helps to like calm the tremors to have weight on your hand. And so I told them I was like, OK, make sure you're cleaning it and don't ever put it on the edge of like a bowl, especially an empty bowl, because it will spill over and it'll break your dishes and it'll make a mess. Literally, I kid you not, like a day later, I'm an idiot. And I was like trying to eat. I like a bowl of corn and I had eaten like half of it and I set it off to the side so I could like do my grad work and stuff. And all of a sudden there's like a crashing and the bowl of corn spilled all over the floor. The weighted silverware. The weighted silverware was fine. I mean, it's like solid stainless steel. It was fine. But the bowl broke and everything. I was like. Speaker 3 So all those yellow bits were corn, yes. Speaker 4 I had I had to vacuum the floors everywhere. Speaker 3 Blind girl moment I just saw that. I was like, huh, wonder what that is? Speaker 4 Yeah, I know. That would be the corn in my carpet. Yeah, yeah, yeah. I was pretty irritated. Speaker 3 I live and learn, yeah. Speaker 4 I was like, well, at least this is good teaching moment for somebody out there. Yeah, barely. I didn't learn from my own video. Speaker 1 I fear I would be the type of person to do that. I do that with normal silverware. Speaker 4 Yeah, well, it's just so heavy that. Speaker 3 I kind of feel this weighted silverware. I like that I can't. Speaker 4 Bring you a spoon. Speaker 3 How heavy it is? It's not. Speaker 4 Like that heavy? Yeah. Here, let me go grab you home. I have a spoon that's clean right now I think. Speaker 3 Brief break, Please hold. Speaker 1 Spoon. Intermission Spoon. Speaker 3 Intermission Spoon Hefty. But yeah, that's got a nice feel to it. I can see how that would be helpful. OK, here's your spoon. Speaker 4 Thank you. But yeah, that's why it fills out 'cause the the back end is heavy, yeah. Speaker 1 Yeah, that makes sense. I. Speaker 4 Wish they hadn't made it. They should have made the weighted part in like the the bottom. I guess I see why they didn't do that 'cause you need the weighted part in your actual hand. But yeah, it does make eating a little dangerous if you're not getting careful. Speaker 1 Yeah, I could see that. Speaker 2 That's why you always have a napkin next to you. Speaker 1 Yes. Speaker 4 True. Speaker 1 That is handy. Speaker 3 Amazing going back to what she said about like her like she got diagnosed at 15 and like didn't have it before that. That's another thing that we had like first talked about when we were when I found out that because because I was friends with you before I found out you had a disability. The Journey of Self-Advocacy and Essential Tremor Research And then I feel like that just like made us closer because I was like, oh, you can relate. And so like one of the things we we talked about early in those discussions was the difference between having it all your life and like knowing it versus it showing up later. Speaker 2 Yeah. Speaker 1 Yeah, I was saying about that earlier when she said that I was like, 'cause we have been taught to advocate for ourselves, like all our lives too, life's lives. And and so like that experience is different in particular, like we didn't ever have that period of like having to learn about it ourselves cuz it's just our lives. Speaker 4 Yeah, and it's interesting cuz like of course I had like my parents and friends to support me and stuff, but they didn't know about it either. I mean, and to have it so young is pretty uncommon. And so I, I just remember when it first started, my parents were supportive and everything, but most of the research I was doing was on my own. And then just kind of as time has gone on, I've, you know, as I've struggled and as I've seen other people struggled and got more involved in like the ET community, I've been like, you know what? This is something that I think more people should know about and that, you know, I want support for and I want other people to have support for. And so, yeah, I, it's not, it's weird because I guess nobody ever told me to advocate. So it's kind of nice too, because I've learned and grown into myself and like how to advocate for myself and make that something that I want to do. Speaker 1 Yeah, yeah. I think that's an important skill for everybody to have, like whether you're disabled or not. Speaker 3 Was it when you were like researching for it when you first got it? Was there a lot like out there? Because yours is more rare than like a lot of like just blindness in general obviously is a huge spectrum, but there's a lot more out there about blindness. But since yours is a lot more uncommon, was it hard to kind of find resources? Speaker 4 Well, it's technically one of the most common types of tremor that's out there, mostly. Speaker 3 There are other kinds. There are other kinds of other kinds. Speaker 4 Like like with Parkinson's. Speaker 3 Non essential tremor not. Speaker 4 Essential basically. Basically all other tremors are there's like to get categories, you've got a central tremor, which basically is just like a foundational bucket for everything. They don't know why, why it exists. Like yeah, they catch all. We're like the other one is usually like with some other type of tremor or some other type of symptom. And so like Parkinson's and things like that. Or like sometimes people with thyroid issues get tremor, but it's all related to like another issue that they have, whereas like essential tremors, not related to another issue. So I don't remember what the rest of your question was. I was like, how, how easy was it to research? Because it's common. There's like, there's a lot of like blanket basic information. Like you can just like look it up and AI is going to be like, whoa, you shake. Speaker 1 Genius. Speaker 4 Most common with like older people, because a lot of the time, you know, when people get old and they start shaking, I am old. Basically, I share the most common thing I share with people or they're like 80 years old. But you know, when you get old and you just start shaking, they just call it a central tremor because it's like not, it's just because you're aging. Well, mine, I have a central tremor. Obviously I'm not 80 and I'm not just magically aiding aging at 15 years old. So it's, it was, it was easy to find basic information, but there's not a whole lot of information because there's still a lot of research going on because they don't really know what the cause is. Like I remember when we were going through process of diagnosis and we were talking about because we didn't know, we were like, so like, is there a cure? Are there medicines or like, what's the deal? Basically they're like, well, we don't really know what causes it. We don't even necessarily know what part of like the brain it actually stems from, or if it's even a brain issue or if it's just simply a nerve issue. All we know is that your brain and your nerves are not communicating. If so, it makes it harder. Speaker 3 If there's any, like if there's ever like a, a research trial or something, would you, would that be something you would want to be a part of, of like trying to figure out and understand more about where it comes from and. Speaker 4 I mean potentially it's an interesting point cause actually I was talking to an 85 year old woman recently and she do I. Speaker 1 Just. Speaker 4 Do on the daily but she has essential tremor but she's had it since she was in her third like late 30s or early 40s which is still earlier than most people. Most people wouldn't get it till they're at least 60 so. Speaker 3 You're really rare. Speaker 4 I am really rare. It is pretty rare and so and I'm female, which makes even more rare. And so I was talking to her about it and she was like she, she obviously had it later in life in me. So I think she wasn't, she never really came to terms with it as much as I have even in a few short years. And so she did, she tried to sign up for a trial. They, I don't remember exactly what the trial was, but I don't remember. I don't think it was a medication, but I'm not sure it was a surgery either. But anyway, it was something that they were doing in the past few years. And she tried to sign up, but they told her like she wasn't eligible or something. But it made me kind of think, 'cause I was like, well, is that something I would do? And I don't know, I don't think if it was a surgery, especially like an invasive surgery, I don't think that that's something that I would want to do because that's probably going to be a lot. Speaker 3 Of me that'll, yeah, probably. Speaker 4 Going to do brain surgery. I don't really want a brain surgery. So I mean I know they've done some things in like electrotherapy type of stuff. I wouldn't mind trying something like that. I don't know if it's I just don't really like the idea of like invasive surgery. I'm not that desperate. Navigating Visible and Invisible Disabilities in Public It's like really with. Speaker 3 Albinism. Obviously there's, there's no like surgery or anything to fix it, but there's been like like the NIH and some other organizations have done like research trials where you can, but it's not like necessarily working for the cure. It's just like trying to understand more about it and find more like types and stuff. So it's like more genetic testing type stuff. And I haven't been part of that, but I know that those, like, exist and more so for like, I think I've talked about this a little bit to you at least, Brienne, there's a type of albinism. Well, it's not a type of albinism. It's its own thing called HPS. That albinism is a symptom of that. But it's like a chronic disease, like a chronic illness. And so they're like actively working towards a cure for that because it like actually is a medical thing. But it's interesting. It's the you, you are, we're pretty much in agreement with the I don't want to cure idea. Yeah. Have you guys done an episode about that? Speaker 1 I know we've talked about it, but I don't know if we'd have done like a whole episode on it, yeah. Speaker 3 That would be a good one. Speaker 2 Yeah, that would be an. Speaker 3 Interesting talk. I think we briefly mentioned it in like the first episode I was ever on. Yeah, back when we did like the best things about being blind or whatever. Speaker 1 Yeah, that that might be a good short idea, actually, like interviewing our blind friends or other disabled friends and being like, would you wanna cure? And we could have their little short answers. I need a freaking I think I've talked. Speaker 2 To Darby about it like, because we've had discussions about it before. Speaker 1 We need to have Darby on again. I'm sorry. I need a mini mic though so I can interview people. Speaker 2 And just shove it in their face. Hello. Speaker 4 Answer my questions. Speaker 3 Get a whole like massive the actual like stage mic like not even the like the tiny ones, just the full like I'm holding out like a gesture as if like you guys can see it like the. Speaker 2 Big obnoxious ones. Speaker 1 No, I need a like a news reporter microphone. Speaker 2 Hello. Speaker 3 You're the massive like square ones. Speaker 1 Hello. Speaker 2 Are you blind? Speaker 3 Just kind of like get into the discussion of like visible versus invisible visibilities though, because we've talked about that because yours is like technically it's visible like from like from a distance. Maybe not. I mean, maybe it's more visible to someone who's not blind. Speaker 4 Yeah. Speaker 3 Yeah. But yours is more visible especially like people can like people see it I guess more when you're like interacting with something. And so that's we talked about how people like give you weird looks and like the way that people have reacted to that versus unless I have my cane with me, people who don't really necessarily know. Speaker 4 Yeah, I mean, you have to definitely see me like interacting with something. So like I don't have resting tremors. So like I'm just sitting there. You're probably not going to see me shaking, but. Speaker 3 Yeah, you guys don't know what just happened. I just touched her hand to see if I can feel her handshaking. Feel like prove it. Speaker 2 You don't look. Speaker 3 Yeah, it's kind of really hard because. Speaker 4 I'm like squeezing you. You're more likely to feel it as far as I know. I don't know. I can't imagine what it's like to be another person, like touching me and feeling my tremors. I feel like that would be so weird. But that's 'cause I feel him in hugging. Speaker 3 You is kind of fun. It's like, oh, that's. Speaker 4 Stuff that I don't think about, like that people can actually like, feel me shaking, like I. Speaker 3 Don't really notice it, like obviously I'm not like touching you that much. Speaker 4 Yes, sure, Lyra. OK yeah. So people can't really notice it, but but if I'm like, one thing that I always hated was like speech class or doing like a presentation. Because if I have to like hold a paper or like a remote or anything, people can obviously see me shaking. And like, yes, I'm nervous, but it's not because I'm nervous. Like I just shake and especially papers. And so I'm like standing up there and the whole crack in my papers. Speaker 3 Yeah. Speaker 4 Wrinkling I look like I'm terrified for my life. Yeah, fine. It's just. And people always are like man, you look so nerd are like, are you OK? I've had this happen in public where like I'll be holding something and people think I'm scared because I'm shaking and they're like, are you OK? I'm like yeah, are you like And they're like, oh, you just were shaking. I'm like. Speaker 3 Oh yeah, I do that. Speaker 1 I do that, yeah. That's the unfortunate thing. I notice. That's the unfortunate thing about blindness is like, like we don't carry our canes around a lot. So like when we're in the grocery store in public, people just, like, assume stuff that we do is because we're like, dumb and not blind. Like if I'm at the gas station trying to get food or whatever and I yeah, anyway, no, I'm not getting gas. But if I'm like at the convenience store and I try to like scan my card or whatever and it says something on the. Speaker 3 Screen like where is and I'm like feeling like moving my card. Speaker 1 Yeah, yeah. And I'm like. Speaker 3 Where's the thing? And I'm like, they have to awkwardly point and say, oh, it's right there. Yeah, I can do that. OK. But you guys use your cane less than I do. I like mostly have mine on me all times even like just walking around campus. I have it when I don't need it. Speaker 2 Just as I get to get identified. Speaker 1 Well, is it visible though? Speaker 2 No, it's in my backpack. Speaker 1 I. Speaker 2 Mean I always have it see I. Speaker 3 Use mine like just walking across campus. Speaker 1 I need to like carry my indicator because like, I don't like people making assumptions about me. Speaker 3 But even then, when I have it, it's like people don't know what it means and so they still think I'm dumb. Speaker 1 I mean, I don't know if if people here would know what it means they. Speaker 2 'D probably be like. Speaker 1 What it means? Maybe people. Speaker 3 Think about what their advisor, Yeah, they don't really think. Speaker 1 Anything of it, I don't know. Well, a lot of people in like when I was younger thought it was like a walking stick. Speaker 3 Somebody thought it was nunchucks when it was. Speaker 4 That's scary. I can see that. Speaker 3 You always talk. I know you said one time that you when you see me walking around campus, just be zooming along with my cane. Speaker 4 You do zoom. Speaker 3 I'm a fast Walker, you are. Speaker 1 We zoom too, not with our canes though. Speaker 2 Well I had to get mine longer, like extra long because I walk so fast. Speaker 3 Mine might be a little too short, I don't know. It's like about where like like chest level where they say should be but I don't know. Speaker 2 It works for me. Mine's like at my shoulder I think. Speaker 3 I think Dang that is really high. Speaker 2 That's because I walk really fast. Speaker 1 No I don't know how tall. I think mines like 54 inches but I don't know where that is on me. I'm not very tall. Speaker 2 You're taller than me and me. Speaker 3 Everyone's following me, though. That's not it's OK not an accomplishment. Speaker 1 I'm average height, I'm 54. Speaker 2 I'm below average. Speaker 4 I am also below average 52. I'm 51 and a half one and we are counting the half yes. Speaker 2 Very important. I'm a 5/3 and 1/3 I'm a. Speaker 3 3rd and a third now we're. Speaker 4 Getting it matters. It matters. Speaker 2 Well, at least that was the last time I was measured, but it might not have been accurate like one time. Like I had to get measured last year at cases B and they said I was like 5-2 and I was like how tall am I? Nobody knows. Speaker 1 Do you slouch you? Speaker 2 No. Speaker 1 I don't know. Speaker 2 So I don't know how tall I am actually. Speaker 1 I wish I was like a couple inches taller. Speaker 3 Me too. The Internal Experience of Tremors and Future Anxieties Was this the? This is the first time you've had someone with a different disability on before, right? Speaker 1 I think so. Speaker 3 Yeah, just blindness. Well, three blind people and the girl at the Central. This also the start of that joke. Something's gonna go wrong. Speaker 1 I yeah, I don't think we've had any sighted people either. Speaker 2 We've had sighted people. Speaker 1 Oh, no, I guess we've had like, yeah, Lydia and like Kelsey and Andrea. Speaker 2 And Hannah? Speaker 1 Yeah, OK, so sighted, sighted people who don't work in blind. Speaker 3 Guests or first non blind but still disabled. Speaker 2 Non blind affiliated, yeah. Speaker 4 You're affiliated. Speaker 3 My association with me. Speaker 2 True, I'll. Speaker 4 Take it And I wear glasses. That's about as close as we're. Yeah. Speaker 3 OK, but your glasses fix your eyes. Speaker 1 Yeah, it must be nice. Speaker 3 People like, oh, I, I relate. I'm blind too. I wear glasses, no. Speaker 1 No. Speaker 2 This one guy, This one guy laughs. Speaker 3 Like I'm legally blind without my glasses. Well, put your glasses. Speaker 1 That's not legally blind. Speaker 2 Like there's this guy at my university last year, he came up to Darby and I and he's like, well, cuz he's, he was all being weird and like asking us, we're blind just being all weird. And we're like, yeah, we're visually impaired and stuff. And he's like, well, I'm blind If I close my eyes, that's. Speaker 3 Not a flag. Speaker 1 That's a new one. Speaker 2 It was what? Wild. Speaker 3 Yeah, I'm close. I'm blind. If you close your eyes. Speaker 2 Yeah, that's what I said. I'm like, really? Speaker 3 My hand up and down I. Speaker 1 That's great if I close my. Speaker 2 Ears I can't hear. Speaker 1 You're never told. Speaker 3 About how you don't have resting tremors, I would have just assumed it was like a constant thing. It's only when you're like holding something. Speaker 4 Like it's only like visible like. Speaker 3 It was. Speaker 4 Only visible. Yeah, with resting ones, like I, sorry, I'm looking at my hand as if everybody can also see my head. I think he's resting on my leg. Like, you can't see me shaking. But the weird thing about having tremors is like, gosh, I'm always terrible at describing this to other people, but like. Speaker 3 It's like trying to describe my vision because I don't know what side of people see. Speaker 1 Right. Yeah. Speaker 4 It's like feeling like my whole inside is shaking. So even though you can't see me shaking, I still feel like I'm shaking. Like I've, I don't know, there's a feeling. Speaker 3 Going to sleep, that would be really annoying. Speaker 4 I think it has been. It depends it. Speaker 3 Doesn't calm down if you're tired because like your nervous. Speaker 4 System. It gets worse if I'm tired, yeah. Speaker 3 And maybe it's like my nystagmus where it's like worse when I'm tired. I wonder if it's a similar sort of concept of I mean, it's not the same thing at all, but like, and I don't even know if it would stem from the same like issue. But but going back to you feel people like thinking you're just nervous. I wonder if that like no one's ever said it to me. But I always wonder that if my nystagmus is because I don't realize how much people can see it. Like just, I mean my tinted glasses block it a little bit, but like like if I'm looking at you right now, like. I don't know if you can see my eyes moving back and forth. And so people might just think that I'm just like not wanting to make eye contact and I'm just super nervous or like up to something. Whereas like they, they say that like a sign that like you're high is that your eyes? I'm like, I'm not. I just have Nestagnus. Speaker 1 I promise. Speaker 2 Yeah, my Nestagnus gets worse when I'm either nervous or like my contacts are bothering me or like I'm tired. Because I noticed that on Thursday I my contacts were really bothering me and my Nestagnus was awful. Like my eyes could not focus and I even started noticing it. Like I don't generally notice my eyes moving. I noticed them. It was. Speaker 1 Awful. Mine used to be really bad but I feel like it's not bad anymore. But I was talking to someone the other day about how one of my weird insecurities is that so I can't see on my right eye so my the center of my vision is on the left. So when I'm focusing on something my right eye like automatically moves to the left. So like my left eye is straight and then my right eye is like to the left and I can't control it like I can't move it back. So it's just kind of like that. And I feel like it's like, ugly. Yeah. Like it looks weird. Speaker 3 I mean, you haven't even seen her and you're like, yeah, you're good. You're. Speaker 4 Good. Speaker 1 But I appreciate the sentiment. Speaker 3 I guess you have seen her on like the. Speaker 4 Instagram, I think on Instagram. Speaker 3 Because I, I told her about your podcast like months ago probably. So she's been a follower for a bit. Speaker 2 OK. Speaker 1 Actually you. Actually, I don't, metaphorically speaking. Well, is there anything else that you guys want to talk about public publicize on the Internet? Yeah. Speaker 2 Share with all the people. Speaker 3 Share with the class do. Speaker 4 You have anything? Oh, gosh, I don't know. I don't know what things that we talk about. Speaker 3 Usually when you talked about how like similar to how yours is like not stabled, it's like changing day-to-day, how it'll also get worse over time compared to like my vision pretty much going to be the same most of my life until I like guess old eyes in general, but like yours is going to like get worse overtime. Speaker 4 Yeah, basically when I got diagnosed, the, the Indian guy was like, he was very, very Indian, OK. He was like, you're I'm not going to do the accent because I cannot do an Internet. But he was like, yeah, basically it's going to get worse over time. I honestly, one of the, one of the things I remember most about getting diagnosed was this Indian man who seems like he did not care at all that he diagnosed me with. Like I was like a scared 15 year old. And he's like, yeah, it's going to get worse for the rest of your life and you're just going to get debilitated eventually. Like you're going to need help. It's like, oh, OK, sitting there with my parents and my parents are just like looking at me and I'm looking at them and I'm like, I remember walking out being like, but yeah. So basically it's it's gonna get worse over time, which has been true. It's weird because the first couple years were the most severe years and then it got a little bit better, but it's kind of still just gotten a little bit worse every single year or like struggling with new things every year. And so I don't know, that's kind of a scary thought for me because I know that even in five or ten years, it's very possible that I could just stop being able to like write it all or be able to like feed myself at all. And so that's kind of a terrifying thought, not just for me, but for whoever I end up in a relationship with or if I have a family, like how that would affect like motherhood and stuff like that, or ability to work in things. So I don't know, it's, it's one of those things that I'm like, sometimes I'm at peace about it and then sometimes I'm like, oh gosh, I don't know about that. Especially in talking with like the 85 year old woman, you know, we were talking about how she had experienced it getting worse over time. And of course it's a little bit different for her because she started at 40 and it had it for 40 years. And obviously you get more shaky as you get older already, but she was talking about how, you know, she kind of had struggles with it getting worse. And honestly, after that, I felt worse. I was like, oh gosh, I'm anxious again. But in the end, I think I mean, if I'm, if I'm with the right people, surrounded by the right family and friends, it won't really matter that much because you'll have people to help me and stuff. I just got out like, you know, let go of my pride a little bit. Discussing Disability Pet Peeves and Episode Wrap-Up Oh, and one funny thing I was gonna I forgot I was going to mention when we were talking about how like most, most of the time only old people have it. And so it's like rare is just a a kind of funny little pet peeve of mine is the fact that, like the large print sections at libraries are mostly like old people books because they don't think about like people our age being blind. They're like, Oh yeah, it's for people who got like, cataracts as they get older. Speaker 1 And they're literally, I'm like, yeah, I had cataract surgery when I was like 6, but OK, it's. Speaker 3 Like there's no, there's no, there's not very many. Like young people, large print books. We're just in. Speaker 1 A person book. Well, OK, another thing. I thought you were gonna say this about the large print section. And like, large print in general is it's like a little bit large, but it's not large enough. Yeah, like it's and. Speaker 3 It's inconsistent, yeah. Sometimes it's like 20 point fawn and it's like, oh, that's great. Sometimes it's like 14 or 16. I'm like, OK, there's a little bit stick my face 2 inches away. Speaker 4 Right, where do you need? Speaker 3 It I don't, I don't know, there's not like a set number because most of the time I just use like a magnifier for print books. So I'm not really like a set number of like oh it used to be like 18 point font is and above is generally pretty good do. Speaker 4 You know what your phone's at. Your phone's massive. Speaker 3 I don't know, but it's whatever. Like the second highest, it's 235 percent, 235. I don't know worry, yeah, I don't know what like point size that. Speaker 1 Is I just I just magnified? Speaker 2 Mine's at 120%, but I still use Zoom because like I don't want because I used to have it like at 135% and people would be like Oh my. Speaker 3 Gosh, your phone's SO. Speaker 1 Big. Speaker 2 So I turned it down a little. Speaker 3 Bit I just know that like people can like if I'm doing something I don't want, like somebody behind me to read, yeah, I just turn the brightness really down and I stick my food closer. And I hope that works. Maybe. Speaker 4 You need to try like a privacy screen because they they like block. Speaker 1 Yeah, my mom got one of those for her computer. Speaker 4 People like you can't see. My dad has. Speaker 3 That I might actually, I might try that because I know people that have that they like, don't have massive fonts. So yeah. Speaker 2 I just, I feel like I'm, I should get that from my laptop because like, I always have to have it zoomed in. Yeah. And I'm like, I don't want people to read what I'm looking at. Speaker 1 In class, I'm afraid people like cheat off me in like class and on tests and stuff because I've had people admit like, oh, I used to cheat off you. By the way, in Spanish class I'm like. Speaker 4 A crazy thing, people. Speaker 3 Could never accuse me of cheating on someone because. Speaker 4 Yeah, right. They're. Speaker 3 Like, did you cheat on them? I'm like that person has. I can barely see my own screen, right. You think I'd be able to? Yeah, but. Speaker 1 Yeah, being blind is fun. Speaker 3 Yay, yay. OK. Maybe you could come up with like on a positive note, what's your? Speaker 4 Favorite look, just think it's entertaining or like every day is a new day, you know, like I every day is a little bit. It's unpredictable. It's unpredictable. I'm like, maybe today is gonna be a good day, Maybe it's gonna be a bad day, and maybe today I'm gonna drop my spoon on the floor, like, And at least nothing spicy, I guess. Speaker 1 That's a good way to look at it. Well, if you guys don't have anything else to publicize on the Internet, I guess we're done for this week. It was a good episode. Speaker 3 I agree. Thanks for having us. Yeah. Speaker 1 Thanks for having us. Thanks for being on our podcast. If you want to follow us on Instagram, you can do so at the Unseen Perspective at 2024 or wait, what? You can do so at the unseen perspective 2024. Hello and sorry you you do the outro you. Speaker 2 Know I was looking at myself OK if you wanna follow us on Instagram or e-mail us at the Unseen Perspective 2024 on [email protected] on the e-mail or you can listen to us on Spotify or watch on YouTube. And if you want to to get another blind experience podcast, follow Cases B Podcasting or Discover podcasting at Cases BI. Can't talk anyway. Speaker 1 Yeah. Is that it? Speaker 3 And I'll, I'll send you all the links where you can find Brianne. Speaker 1 Yes, and we will. Speaker 2 Attach that yes to the episode. Speaker 3 And I'll like to spell out her name for you so you can like get it right and. Speaker 1 Oh, yes, thank. Speaker 3 You scriptures and stuff. Speaker 2 Yes, but let's have everything all nice. Speaker 1 And beautiful and fabulous, Yes, because we love that. Speaker 2 Yes, yeah. I just like peeked over and I saw my face. I was, I was like, oh. Speaker 1 Hello there, I was just looking at the the whatever is over the oven. Speaker 3 Is this no part of the outfit or not? No. Speaker 1 No, we finished the outro, Yeah. Speaker 3 Ohh. Speaker 1 Well, did we ever say bye? Speaker 2 Bye bye, bye, bye, bye bye.