SPEAKER_00 0:00

Told my husband one day I'm like, I'm gonna wear this pink suit that I had. And he's like yellow. That's not pink, it's yellow.

SPEAKER_02 0:08

And I'm like, oh my God. No.

SPEAKER_00 0:18

Hey everyone, I'm Charity.

SPEAKER_01 0:19

And I'm Austin. Welcome to the Central Vision Podcast.

SPEAKER_00 0:28

We're two hosts living with vision loss, sharing honest conversations about life through the lens of blindness and low vision. From relationships and travel to careers and technology, from family and confidence to accessibility and everything in between.

SPEAKER_01 0:42

We'll share our experiences, ask the questions people are already thinking, laugh through the awkward moments, and explore what it really means to live with vision loss.

SPEAKER_00 0:49

So whether you're living with vision loss yourself, love, support, or know someone who is, or you're simply curious, looking for a different perspective, you're in the right place.

SPEAKER_01 1:04

Welcome, welcome, welcome to all of our listeners. This is our very first recording, our very first episode of Central Vision Podcast. My name is Austin, and I'm here with Charity, your other co-host. So today we thought we're going to do is just give a little bit of background about who we are, what our vision loss journey really looked like for each of us, and then kind of how the podcast started, and then where we want to go with the podcast. And uh hopefully you all will enjoy where we're gonna go with it. So starting off, Charity, how about you tell us who you are and then get into when it all started for you?

SPEAKER_00 1:39

Okay, great. Um, yeah, I'm Charity Roach. I am 54. I am married, a mom of three. Um, my youngest just started her senior year of high school. So, and my oldest is just got married last year. So um, I've got a wide variety of age of kids, and I have retinitis pigmentosa. I was diagnosed when I was 23. I had just finished college. Um, up until that point, I had no idea I had any vision loss. Um hindsight's 2020, of course. So uh looking back, I I realized that I did have vision loss, even though I didn't recognize it at the time. But yeah, so I was diagnosed when I was 20, 22 or 23. So it's been about 30 years since since my diagnosis.

SPEAKER_01 2:32

So, but was it remind me, because I I you know there's so many people in our community, but it was it um was it Usher's or was it just straight pigment retinized pigmentosa?

SPEAKER_00 2:41

I am straight RP. Yep, I'm just straight up RP.

SPEAKER_01 2:44

Oh, right.

SPEAKER_00 2:45

Yeah.

SPEAKER_01 2:46

Okay, okay. Now, do you know, just for anyone that actually cares about their genes, do you know what your um your actual gene is, the one that was affected?

SPEAKER_00 2:54

I do. Um, I had genetic testing done in 2018. Um up until that point, it had never really been offered to me. Um when we moved to Georgia, I went to um the Emory I Center, and they were at that time, I think it was FFB, was um hosting a study genes. So my retina specialist asked me if I wanted to participate in that, so I wasn't charged for it, but I did the little spit in the tube test, and about a year later it took for me to get results, and I am autosomal recessive for um the gene PHAM 161A.

SPEAKER_01 3:37

Okay, okay, okay.

SPEAKER_00 3:39

Yeah.

SPEAKER_01 3:40

Now you so you told me when you were diagnosed that you were, was it pharmaceutical or were you like a chemist?

SPEAKER_00 3:47

I so I went to school for chemistry. I have a bachelor's degree in chemistry, and I worked in big pharma. I worked for Pfizer. I started in their labs, um, and then I switched companies. I ended up working, moving to South Carolina, working for Roche Carolina, where my career ended. Um but at that point I was in more of a management role. I was in quality assurance and validation.

SPEAKER_01 4:15

So But so um so were you but what okay, so but you had you had to stop because of your vision, right? That's that that was the thing.

SPEAKER_00 4:24

In the end, yeah. I had to stop because of my vision. It just got to the point where I could not effectively do my job. So it was time. It was time to do that.

SPEAKER_01 4:34

Let someone have a real fun job, real fun time taking the wrong pill.

SPEAKER_00 4:39

Exactly. Exactly. I was responsible for all of the quality of the materials that left the site.

SPEAKER_01 4:45

And when you can't really see it, it's not a good thing. Okay. So how long? So you've got your bachelor's, you did all that, but how so how long did the did the RP on set for you before like it was just like how how late, how far into your career were you?

SPEAKER_00 5:04

So when I was diagnosed, I was um I had less than I mean, half of my vision was already gone. I was probably at about 40 degrees, which is it that's crazy to me that so not no. Like what? Yeah, but how how did I lose 60% of my vision and not even realize it? So I was um I had to quit my job in um 2011. So I was oh god, how old was I then? I was 38, I think, at that point in time. So I was 20 years into my career at that point when I had to leave. Yeah.

SPEAKER_01 5:48

So I probably should have mentioned for anyone listening to this that you know, there's tons of different uh vision conditions that I mean it's just it's a mass world of them. And you know, just like they say with autism, it is a massive spectrum. You know, a lot of people think the blindness is black or white, and that's honestly, that's what I thought. I thought, like, you know, before all this happened to me, I thought if you're blind, it's just a black sheet over your eyes. And I was, it's like I got taught a lesson.

SPEAKER_00 6:17

I was talking to my husband about it just the other week, and he said, I asked him that question, and he said, and tell me, he would have thought the same thing. Like it was just you either can see or you can't.

SPEAKER_01 6:30

Well, there wasn't a lot of education.

SPEAKER_00 6:33

No, there's not. There, there definitely isn't. Um, I think most of the population who isn't living with what we're living with would think that same thing.

SPEAKER_01 6:42

Right, right. So what and and to the listeners, what she has is the same thing that what I have, but mine is a little bit different. But it is retinized pigmentosa. So what that is, is it to be honest, I don't even have all the science behind me. You would think the amount of times I go to the office, but it's just it's kind of a blur when you're there. It's just yada yada, you're you're losing vision, like, yep, same as last time. Got I'm still healthy. But what it is is we are losing our peripherals, so we can see in the center of our eye. We have a like a central hole for the most part, but it is always progressing. But some people lose it very quickly, some people lose it slowly, some people lose it all, some people don't lose it all. It's a very unknown thing, which is one of the hardest things, at least for me, of this. You almost wish sometimes, like either take my vision or don't, but not knowing what's going to happen is kind of nerve-wracking, you know?

SPEAKER_00 7:33

It's very hard. So in in that regard, for me, and then I'd like to hear uh about yours, but for me, it is almost like I think when I was diagnosed, I would probably say it was like looking through I want to say a like a toilet paper roll or a paper towel roll. And I would say today, it's like uh it's not even a straw. It's like a coffee stir. It's so sad. It's I mean, it's just a little bit. It's just a little bit.

SPEAKER_01 8:05

And it's it's crazy, you know, like it's because you were just saying 40 degrees, like, oh my god, 40 degrees right now sounds amazing. So much, you know, and most people have 180, but like 40 degrees. That's I'd be hitting the lottery. You know, I saw someone on one of the communities say, you know, I've like 35 degrees, whatever, and still driving, like, awesome for you, man. Okay. Yep. I don't want to say one day you'll learn. I hope you don't, but man, you better enjoy that 35 degrees.

SPEAKER_00 8:39

Yeah, you yeah, you really should because you never know when it's going.

SPEAKER_01 8:43

No.

SPEAKER_00 8:43

And so what about you? What was tell us about your diagnosis when it came on and where you're at now?

SPEAKER_01 8:52

Yeah, so I'm 35, and my diagnosis, it's kind of a blur, literally, but it was like 25 years old, I think. And um, it was maybe 2017. The math I think makes sense there, but it was around there. And uh, you know, I had noticed all of my life that there was something going on, and what I have is RP, and it's actually from Usher syndrome, which is also my hearing as well. But I I um I never ended up losing my hearing, and hopefully that stays the same. It's almost like I've compensated more. You know, my hearing's gotten better because I don't have to worry about my or because you know, there's not so much to focus on with my vision anymore. So it's it's kind of a weird thing to happen there. But like growing up though, there were always kind of signs. Like I don't know, and I guess you don't realize it until you actually are forced to look back at it. And you know, when you go to the doctor's office, they give you a little button and you have to stare at the middle of the screen, and then they kind of shake little areas of the screen or whatever. Um, it's like a peripheral test. But it hit a point to where I kind of thought the machines were always broken, and I would just stare, and I would honestly be thinking about a song in my head, and just dun dun dun and just keep clicking, and like I gotta get some of them right, you know. And uh uh it but the doctors never said a thing about it. And I have actually been shocked as I figured out about my diagnosis and whatnot. I was shocked to figure out that there are actually people around the world, doctors around the world, and uh, you know, patients and whatnot around the world that are saying this, that the the actual medical professionals are still there are some out there that still don't recognize it and or maybe have the training or the knowledge about it. So that's very shocking. So the point is I had uh there there were signs, and then that I mean the nighttime got a little bit worse, but we just dis we decided as a as a group in my family to call me clumsy, and that was all that was going on with me, you know. Like Austin, the curb, like you gotta look around, bud. You gotta look at where you're going.

SPEAKER_00 11:03

Pay attention.

SPEAKER_01 11:05

It turns out it wasn't that, you know. I am a little bit clumsier, but at the same time, like I never fall, I'm graceful, you know. Um, but so for me, um I actually fully noticed it, it was a weak difference from riding motorcycles like a psychopath. And then um a week later, I was on the same route that I was on the the week before at night, and um I was getting ready to do something stupid on my motorcycle to pull a wheelie, and I was on the highway next to people, and I like, you know, first let's check around and make sure there's no one right behind me or right next to me. And I looked next to me, and there is a bike with two people on it, and you know, a foot and a half away from me, like, whoa, where did you come from? And then I looked to the right, there was another one, so I like sat down back down on my seat, like, something is not okay here. That's like, and they're still right next to me. What is going on here? I can't see them at all. It's like having horse blinders on, and um then my friends noticed I was in the back of the pack the whole time and asked if like honesty asked, like, are you drunk? So no, I it's not because I was swerving and stuff, because I was so I'm usually in the front, I was so slow and timid. And um, we went to the doctors and I got diagnosed with uh well, first they didn't know I did the get the gene testing. And originally when I went in, it was gonna be a thousand dollars a gene, like an entire gene, right? So they said like without saying that they were saying like you could go bankrupt before we find the gene. And at the and at the time when I was doing that, or at least around the area I was in, you know, Columbus, Ohio, that there was um I heard different things from different doctors, but there were like a hundred genes that they knew of for sure that could create retinized pigmentosa. So that's potentially a hundred thousand dollars right there. Right, yeah, you know, and uh you know, a month later the science changed and became $250 for your entire body's gene panel. So that was awesome. But yeah, so here we are. Um, and just kind of moving and grooving through it. It's definitely gotten worse. I don't know. Um it's hard that you know, I tell a lot of people this, a lot of people ask, like, you know, there'll be people that can see it and see, like, yeah, you're getting worse. But I can't see it. And I tell people it's like it's like having a puppy or a kid, and you know, a friend comes over and three weeks later they come back over like, wow, he's grown so much, but you don't notice it at all. You know, you don't notice the growth and the height that has changed from that kid or that puppy, but it's the same thing with your vision almost, where you just don't see the change exactly. But I'll notice it if I went to maybe I went to like uh Universal Studios, right? I went there three years ago, and then I come back a you know today to where I'll notice, oh, I used to be able to see way better in this area. And that's like how I will notice the the changes in it.

SPEAKER_00 14:02

See, that's kind of interesting because um I feel like I am very in tune with my vision and I notice changes before even like my eye doctor would, or um yeah, I I just feel like I'm very in tune and I know when it's changing and when it's not. Like day to day, week to week. Yeah.

SPEAKER_01 14:24

I mean how fast, how progressive?

SPEAKER_00 14:27

Is mine?

SPEAKER_01 14:28

Yeah, like how did you have a part where it just went boom, or was it just always a slow move?

SPEAKER_00 14:35

So when I up to the point I was diagnosed, I feel like it was a really sm a really slow move to the point where I didn't even notice. Um, I will say I did have um kind of like the same thing with you on night blindness, where I mean, I had my license and I drove to uh near Detroit one day. And I'm originally from Michigan, so I was I was driving to near Detroit one day and I was meeting my parents somewhere, and I said, you know, I have a really hard time driving at night. And my dad was like, Well, maybe you shouldn't drive at night. I'm like, okay, well, that's not much of a help, but I and I didn't think anything of it. I felt like it was normal. I also have colorblindness, which is part of the condition, and I can't tell pink from yellow, and um so Easter is just a blur for you. No, what's funny is yellow looks good on absolutely nobody. And I told my husband one day, I'm like, I'm gonna wear this pink suit that I had, and he's like yellow. That's not pink, it's yellow.

SPEAKER_02 15:46

And I'm like, oh my god.

SPEAKER_00 15:48

No, no, nobody looks good in yellow.

SPEAKER_02 15:51

Nobody.

SPEAKER_00 15:52

Um, I don't you had I had signs from way back when, like you said, hindsight, hindsight's 2020.

SPEAKER_03 15:59

Sure.

SPEAKER_00 15:59

Um I had I had gotten in a car accident. Same, same type of thing. I was 16, I got in a car accident, checked my blind spot, switched lanes, and hit a car. Awesome. But even then, nobody knew. I went to when I was finally diagnosed, it was interesting. I went to uh I was shopping and I had a really rough weekend. It was the time of blockbuster. You'd look for movies and step in, step ahead. Yeah, step ahead, pick out your movie. And it was always me running in front of somebody. And I went, I was I was working in pharmaceuticals then and I went into work that day and I called my eye doctor, who was about two hours away, and I said, Either I'm crazy or something is seriously wrong with me. And he thought, Well, I I don't think you're crazy. What's going on? And I told him, and they sent me to the retino specialist. And but once I was diagnosed, he said, Next time you're in town, come and see me. Even after being diagnosed, and I went to see him, looking at my eyes, they don't present as a normal RP patient. Like I they couldn't find the bone spicules and things like that that are in patients with RP. Um, I just have a a very, I don't know, unique presentation. But so it presented itself. The progression was slow. Then I had my child, and right after I had my child, I lost a lot. Yeah, I lost a lot of vision.

SPEAKER_01 17:36

Did uh and for anyone listening, they can hear that. So Charity has two dogs, one of them being her new guide dog.

SPEAKER_00 17:43

Sorry. Yes, I've got and they were so good up until like a minute ago. Yeah, I have a guide dog, Arlo, back there, and I also have a German shepherd, and they've decided now is the time to wrestle. So obviously.

SPEAKER_01 17:59

Sorry. Obviously, I love that. So that's interesting. That so do you think, did you hear anything? Was the pregnancy like tied to it at all? Because I know pregnancy, you know, I'm a male here, but you know, I know what I know, right? But you know, so uh pregnancy I know can do some crazy things, like you can be out of nowhere allergic to things, or it can remove alert allergies altogether. So did out did did pregnancy have anything to do with the um the progression of the vision at all?

SPEAKER_00 18:29

Do you know anything of they would say yes. That just the stress on your body. Um when yeah, when I was diagnosed, they you know, I asked, Oh, you know, what can you do? What can I do? It's nothing. For a while it was take vitamin A, and now it's don't take vitamin A. Um, and he they the biggest thing they said is to avoid stress. So um the stress of pregnancy on my body, um, it was it was funny because during the pregnancy it was stable, like everything was stable, and then afterward it was so like labor labor was probably it that just sent it over to you. I don't know.

SPEAKER_01 19:10

Huh?

SPEAKER_00 19:10

I yeah, I don't know. And it wasn't like instantaneously, but within that year I had lost, I had gone from maybe like 40 or 45 degrees down to like the 20 mark.

SPEAKER_01 19:22

Oh god.

SPEAKER_00 19:23

So yeah.

SPEAKER_01 19:24

That is yep, that is so far. Oh, just all that stress, and it just doesn't get better. Oh, I'd hate that. Yeah, of course I don't have to have it.

SPEAKER_00 19:35

But he was worth it. He was worth it. I'd do it again. I would do it again.

SPEAKER_01 19:41

So actually, so where just for anyone listening, because um, so I don't use a cane yet, although sometimes I probably should, and I don't have a guide dog either, but uh I know there are different places to go and whatnot, but so you have Arlo, and where is Arlo from? Because you had just done that.

SPEAKER_00 19:57

Yeah, so I've had Arlo's my fourth guide dog, and there's a there's a story behind that too. But yeah, he's my fourth guide dog, and I have gotten all of my dogs from Leader Dogs for the Blind in Rochester, Michigan. Great organization. Um, there are many organizations out there to get a dog from. I returned to them not only because I had great experiences with them, but it's the familiarity. Right. Um, like not having to learn a new school when you can't see. Like I know it's mapped in my head and it's easy for me, but I I do truly love them and um it was a great experience all around for me.

SPEAKER_02 20:36

I seems like he loves you.

SPEAKER_00 20:38

Oh, I'm so sorry. He does, he does, he loves me.

SPEAKER_02 20:43

At least he loves your other dog.

SPEAKER_00 20:45

He loves my other dog for sure. Um so I also after 17 years of being a guide dog user, I decided that I had to actually send one of my guide dogs back. Um, it had a health issue. And after seven months with me, it had to go back. And that was the beginning of this, the beginning of 2026. Yeah, uh, she went back. And while I waited for Arlo, or what turned out to be Arlo, I attended orientation and mobility training with Leader Dog. I had not had cane training up until that point, which is today that wouldn't happen. You get to cane training before you get a dog. But I was kind of grandfathered in, and they're like, Oh, well, now that you've sent the dog back and we've got a little while, you're gonna have to wait. Why don't you come for OM? And I resisted it. Oh, I resisted it. But as much as I thought I hated it, it was an awesome experience. And now I am both a Kane and Guide Dog user.

SPEAKER_01 21:54

So aren't you special?

SPEAKER_00 21:57

Yes, I'm special. I know.

SPEAKER_01 22:00

I know I need to get into that. I uh cause they you know they say, you know, obviously, like learn the tools and the tricks before you have a much harder time learning them. So I definitely need to get on that. And I know it's not as simple as it seems, right? Like I I want to think this just like I mean, it's gotta be extreme spatial awareness and like really paying attention to things. So I watch people, I watch this one gentleman on uh Instagram, I wish I remembered his handle, but you know, he's always wearing, I think, his meta glasses, but he's always explaining his journey when he's walking to a street. Like it's even nerve-wracking for me to see to where he's like, okay, okay, I can hear the car, like, oh, that was a car, like, and he'll, you know, he said, you know, like I think I'm on this like the road right now, and I could hear the nervous in his voice, like, nope, nope, nope. Okay, we're good, we're good. And like, that's just and he's, you know, feeling signs, like, is this a stop sign or is it a yield sign? You know, they obviously have different, you know, feelings with the edges and whatnot, but uh yeah, so I think I need to, it's just not as easy as tapping, like, and that's what I think that that it is.

SPEAKER_00 23:02

Oh no, and it's not because I did it myself. Like, I'm like, I was like you. It's like uh who can't move a stick? Like, right, who can't do that? Like everybody can do that, and so I did it. Like, I'm like, oh, okay, I'm gonna, I'm gonna try it. I had to send in a video actually when I was uh to when I was doing my application for my guide dog, and part of that was your cane skills. And I'm like, okay, I'm gonna show up. Yeah, yeah. And I did it. I did it. And then when I got to OM, they're like, okay, let's see what you can do. And my OM instructor, she's like, ah, that's interesting. Like, what are you what are you doing?

SPEAKER_01 23:46

That's one way to do it. Never seen it done like that before.

SPEAKER_00 23:49

And that's exactly what she said. She's like, that's not wrong. Like that you can do it that way. You just look weird. Like, well, I don't want to look weird. So it's still be the right way to do it. And it obviously so much easier when you have actual training.

SPEAKER_03 24:07

Right.

SPEAKER_00 24:08

And I learned about, yeah, crossing a street, um, evaluating um, evaluating traffic. And uh I I actually went there blind, they did a blindfold session with me where I had obviously no, I couldn't utilize my vision at all. And I crossed like a five-lane, a five-lane intersection, and it was nerve-wracking, very scary for me, but and it was intentional.

SPEAKER_01 24:34

You you you weren't just yeah, we were walking.

SPEAKER_00 24:38

No, yeah, it wasn't it was intentional.

SPEAKER_01 24:41

Okay, cool.

SPEAKER_00 24:41

No, I I think I was a little bit, but um, she was there to pull me out of traffic if need be. But I I did it. It was good.

SPEAKER_01 24:50

Good, good.

SPEAKER_00 24:50

Good. So why why do you choose not to use the cane or have a dog?

SPEAKER_01 24:56

Well, it I would okay, so I would love to have a dog, but it's just because I would love to have a dog because I like dogs, right? But you know, and also I have this fear which you know, it's cool to see your dogs playing together because I I just don't understand guide dogs the way they work, but from what I understand, like they know when they're on that job and when they're not on that job. And they do. That's an interesting thing to me. I always thought that they were always just that you know, constantly doing their job. And I honestly kind of felt bad about that. It's like someone that never gets to like clock out, you know. But having another dog, I'm also worried about my dog going, why does you know, ex dog always get to go with you everywhere? And I don't know, you know, like that makes that breaks my heart because I love my girl to death. And uh, but you know, and I also, you know, I just don't think that I'm there yet. Um, so I I told I told them to stop telling me my degree of vision because it just it didn't help me. And I'm someone, if you tell me what something is for me, I'm gonna start living within that box and not push the boundaries at all. And I like to push the boundaries of what I'm capable of doing and whatnot, and it's maybe something I should work on in some way, but you know, so that's I I think I'm at maybe 10 degrees, if not a little lower. I'm just I'm not positive. Uh that's kind of what they told me last time. Um, but again, I told them not to tell me. But I don't I don't find myself a lot of time needing to use a cane, and it's maybe because I don't know, I frequent places I'm so aware of already, I'm so familiar with already. And I have found that using my phone helps a ton, not because of the flashlight, the flashlight does nothing anymore for the most part, but using the camera, because I'll hold my phone out in front of me, and then then the camera will take whatever is in the screen, it's a lot of them are wide angle now, and it will push that screen or that room or whatever all the way into the screen and brighten it up. So I will stare at that. But then it's funny, right? Because I'm walking behind friends at bars or restaurants or whatever. Um, and I'll be just like staring at what it looks like a dude's butt. Like then someone looks back. If someone looks over my shoulder, and you know, when I was just with my friend uh on Sunday and uh we were having brunch, and she's going to the bathroom, like, you know what, I'll go with you because that way I know where I'm going. Because that's what we have to do sometimes, just like wait for someone else. And I'm just one of the girlfriends that want to go have fun, you know. And uh, but I'm walking behind her and just like, oh my god, you have lost weight. You look great. Like, work it, girl, work it. You know, you know, that's all I'm staring at, you know. And then she, you know, she obviously was having a blast with they kept like turning around looking, it was a lot of fun. Uh, but so like right now that's what I use, and um it's just it's not a big like I think you know, I hear a lot of cane users say this that more so than using the cane themselves and it actually being a big help to them, which I know you hit a certain point where that obviously is a thing, but it's one of its biggest uses is everyone else around you now recognizing you as someone who has vision loss and they'll clear a path, get out of your way, and understand. Because the fact of the matter is with people in our um in our community that deal with what we deal with is that and it's not that the world is just all mean people or something like that, but because it's you know something that can be considered an invisible disability sometimes that people have a nasty attitude sometimes, you know. The sighted, the sighted community can have a nasty attitude because they're not used to someone who they think, you know, because everyone asks, like, you don't look blind or says you don't look blind, like could you draw me a person? Could show me a person that looks blind, you know? And it's just like it's not exactly wonder. Right. Which you wouldn't know by the way, Stevie Wonder.

SPEAKER_00 28:49

That's true. That's true.

SPEAKER_01 28:51

And it's so that's like, you know, so that's one of the reasons I think a king could be useful. And uh and I and I tell myself I wouldn't be nervous about it or I wouldn't be embarrassed, but I I think I probably still would be I was just because no matter what, everyone's looking at you, but I'm already like if I'm willing to walk through a bar and just plow through tables or knock over a tray or whatever, like and do it with such swagger, then I'm pretty sure I can do a cane, but I'll probably be very cool with a cane. I imagine, like, you know, some cool little walk with it too, like, uh, you know.

SPEAKER_00 29:31

I found it saves it saves you a lot of embarrassing moments because when I don't use my cane or my dog, I have to use sighted guide. And if my sighted guide has to separate from me for any reason, I'm like, shove me up against the wall. Just put me up against the wall that way, because if somebody says excuse me, it's like I don't know where to move. I can't.

SPEAKER_03 29:54

Yeah.

SPEAKER_00 29:54

So, and also with the cane or with the dog, when I'm standing there and I'm speaking to someone and they move, and I'm still speaking to them like they hadn't moved. I'm looking like right there. Or they go to shake my hand and I just stand there like I I'm I don't want to touch them. Then having the cane or the dog, it's like, okay, well, she can't see. Like it makes more sense. Some of my behaviors make a lot more sense to people. Yeah.

SPEAKER_01 30:28

I mean, COVID was probably so awesome for some of us, you know, like six feet like distance and whatnot. Like you're moving into people. You can't shake my hand. Yeah. I'm just like you, bud.

SPEAKER_00 30:40

Yeah, exactly. Exactly.

SPEAKER_01 30:43

So moving on, let's talk about. Um, so you, Central Vision Podcast, you are the originator of Central Vision. We did not know each other at all. Um but you created it. So tell me about that. Like when did you start it? Why did you start it?

SPEAKER_00 30:57

So I started it at the beginning of this year, and when I went into it, I never wanted to do it alone, but I could never get anyone to commit to doing it with me. Now I was looking within my friend group. So I had gone to LeaderDog to get my previous dog that ended up having to go back. And while I was there, I I found this community of people. I don't know, I don't know why it clicked in that class, but I left there I collected four or five really good friends. And up until that point, I had fine, I had kind of put myself in a box. Um, my previous guide dog had retired uh uh quite a while back. I had not had cane training yet, and I was three years out from when my previous guide passed away. I wasn't sure if I was ready for a new one. And during that period of time, I put myself in a box and I was afraid to leave the house. I wasn't doing social things. I mean, I wasn't a hermit, but it was it was getting that way. So when I went to Leader Dog for my last dog, I developed this community of people who knew what I was going through, because I didn't have anybody, who knew what I was going through, who supported me through it, who um when I talked to them, they were not just sympathetic, they were empathetic. Either they had been there or they were on their way there to where I was. And when while I was at Leader Dog, I realized that while I developed this strong community of friends that I could take with me, there were a lot of people in the class who didn't have that. And I wanted to find a way to give those people a voice and a way to connect with people in the blind and visually impaired community, other than just that class at Leader Dog. So I worked with someone for a while and we thought we were gonna do the podcast together. And at the last minute, she was kind of like, not really my cup of tea, which as you and I both know, it's a lot of work. If you if your heart's not in it, it's a lot of work. So I decided I would go it alone, which like I said, I did not want to do. So it was rough. I I have minimal vision. The technology piece as I've experienced, you've experienced my level of expertise with technology. Every time Austin gives me a little hint, which is like a minuscule thing for him, I'm like, oh my God, that's so great. He's like, You didn't know that? I'm like, no, I didn't know. But um, so I did it by myself for a little bit, and it wasn't it wasn't what I wanted. And so I reached out into the low vision community. I went into, I think, the RP page and said, hey, this is what I want to do. Is there anyone who has any interest in like even temporarily helping me, like being on here with me? And that's when Austin answered the call. Thank God.

SPEAKER_01 34:22

I really don't remember. It's just like Yeah, that's what it was. I swear there's so many people in this community, like they just weren't, they just didn't exist, and then they were just there all the time now.

SPEAKER_00 34:30

Poof. Here we are.

SPEAKER_01 34:31

Now now it's now it's just charity always texting me and always calling me and always saying, Oh, I learned how to do this. Because you know, my role is also tech support for everyone listening. That is the goal.

SPEAKER_00 34:40

He is the tech support. He is the tech support.

SPEAKER_01 34:43

And I I do when I don't think that I knew that you were already starting it with someone else. I don't know that I understood that that I actually replaced someone, more or less. I didn't understand that.

SPEAKER_00 34:54

Okay, so you didn't. She originally was going to do it with me, and when we when the got down to brass tacks, she was like, This isn't my thing. And I'm like, okay, yeah. So it's not like she started it with me and then she's gone. It was it's always been just me. But the idea was to have somebody else.

SPEAKER_01 35:19

Sure.

SPEAKER_00 35:20

But I didn't want to just put it to the side once she said it wasn't her thing. Because I feel like it's important.

SPEAKER_01 35:28

Right. And that I mean that's a great like segue with all this too, because you know, it's uh because as everyone knows that's listening to this, as you know, Cherry, there are so many podcasts out there, and there are shockingly a lot in our community. But I mean, I think everyone has their own like idea of what they want it to be and the reasons why they do it. Uh so originally, like for you when you were starting Central Vision, what was it that you wanted to come from? And even if it's changed now, what was it? Or maybe you didn't know completely what it was going to be, or it just just talk about that.

SPEAKER_00 36:03

I didn't know completely what it was going to be. I felt like it would grow into something that I could, as it grew, I would mold it into exactly what I wanted. Like if a piece came up that I didn't like, I would just slough it off, set it aside. And if it a piece grew that I loved, I would just embrace it and build more of that of that into it. But it really was around community and giving the blind and visually impaired community a voice and a way to share their story, share their experience, share their expertise. I never wanted it to be about education because I don't feel like I'm the expert. I'm more than happy to share my story and my experience, but that's all it is. And everybody has a different story, a different experience, and things that based on my level of vision, um, my type of vision loss, um, things that work for me. Like I think, oh, that's the most brilliant thing in the whole entire world, and I do it this way. You may be like, that doesn't even work. Like that doesn't work for me, depending on what type of vision loss you have. Because we both have RP. And I think that's important to share too. We both have RP, but that's not what this is about. It's not about RP, it's about vision loss, whether it's from glaucoma, Stargards, Ushers. Um, I have a friend who's so many of them. Bird shot, things I've never heard of before.

SPEAKER_01 37:40

Wait, there's something called Bird Shot.

SPEAKER_00 37:43

WhatsApp?

SPEAKER_01 37:44

That are you saying that's what it's called? Is Bird Shot?

SPEAKER_00 37:47

It's called Bird Shot. Yeah.

SPEAKER_01 37:49

Isn't that like a shotgun shell? I okay. We're gonna trust charity here, but for anyone listening, look into it because you know, we're don't like you said, we're we're not the educators here.

SPEAKER_00 38:03

Definitely not educators. I'm not anyway. You might be, I'm not.

SPEAKER_01 38:08

Nope, nope, no, absolutely not. And that's what, like, you know, for me, joining you, it's because I already wanted to do a podcast myself. And what I knew I wanted to talk about, and what was at least a podcast within the vision, you know, the vision community, is I just wanted to hit, I feel like there's so much that is unsaid in all the community pages. And I mean, there's a lot of people asking things, but even if they ask the right things, it gets buried so quickly. And there's so many groups for, I mean, just retinized pigmentosa, and then there's Usher groups, there's Stargards groups, there's um just low vision groups, there's blind dating groups, blind friend groups, blind supporting groups. I mean, there are so many of them, and it's it's just it's almost too much. So even if you, you know, you finally it and because it's hard to ask questions in our community sometimes to get to that level of confidence for some, it's very it's it's a road to get there. And then you finally ask the question, then like hardly anyone even sees it, or maybe you're just scared to ask the right questions. So that's something I wanted to really come out of this is to talk about the topics that are almost never talked about or they're never acknowledged, and there's so many things. And then, yeah, to bring on the people from our community, it's not just people that have cool stories or just the experts, it's everyone, and that includes people who are outside of our community. You know, you know, if you're a mother or a brother, or maybe an employer, or in some way you come into contact with someone who is non-sighted or is losing their vision or you know, low vision or blindness, that you can ask the questions that you want to ask and address the things that you want to address and for everyone to learn and in some way become a you know metaphorical bridge between the sighted and the non-sighted community. Um, so that's something like that's really what I wanted to be able to bring to it. But then to make it natural, right, to be able to do these conversations that we're doing, because I just don't feel like a lot of people we we I we've talked about this, right? We want to make sure that people feel like they're pulling up a chair with us or hanging out with us. This is not about being serious. This is not about I mean, some of it is going to be serious, right? We'll hit those topics, but it's not about coming here to sit you down, hand you a textbook, and teach you something. It's it's giving our own introspective about everything and just letting the conversations flow and inviting everyone from every facet around us into our world and to experience it with us.

SPEAKER_00 40:36

And I think it is important to get the perspective of the um sighted community um because there it's a perspective that we don't have. Like I I don't have the perspective of the sighted community. I often have to try to think like how would I handle something? Because I get irritated. Sometimes, okay, I get irritated, like, oh, stop doing that for me. Stop, stop helping me like that. Stop, just stop. And then I think, you know, what would I do if I if I was sighted and ran into someone who is visually impaired, what would I be thinking? Like how but I don't know because I'm not that person. So I I do like the perspective of the sighted community and you know, letting them know, like hearing what they think, uh, what's what's going on in their mind when they're trying to assist us, but then giving our perspective as well and saying, okay, that may be what you're trying to do, but this is what's happening.

SPEAKER_01 41:38

Right, right. And that's important, right? Because it's, I mean, just like you said, it's you know, before this happened, before I like start experiencing RP for myself, like I don't know how I'd respond to that. I mean, I've never been like a mean person, you know, but you know, I would be confused, and all I have, you know, at my disposal is to associate this situation of this person who just ran into me or fell over something or whatever, to associate with my previous experiences. So I'm gonna think maybe you're drunk or maybe you're just rude, you're clumsy, you don't care. You know, I the it that's what I'm gonna assume, you know, is going on because I I don't think that this conversation has opened up enough with the side of community. Now, we all talk about this amongst ourselves, but we don't actually reach out and give the people around us the chance to understand their point of view and to let them into our world and to openly talk about it. And I think that's a big, big miss. You know, there was a I was at the beach one time, and uh a friend of mine was with me, and we walked into this beach bar, beach restaurant, whatever, and I stepped on this woman's shoe kind of hard. And I'm a big guy, you know, I'm 6'3, 220 pounds, and I stepped on this younger, I mean not younger, but smaller woman's foot. And uh she was very not happy about it. I'm just very upset. And um, I just I you know I've gotten good at dealing with these kinds of things. Just like, oh my god, I am so sorry. I did not see you. Listen, I have this, you know, like the mask off kind of thing. I have this blind thing going on with me, and uh, I just don't see very well. I'm so so sorry. And it's about like the facial movements you make, and like, you know, and I might be looking like two feet away from my head, but I am looking forward to her, you know. It might have helped my case, you know. But so I did that, then I think she understood, and the gentleman that was with her understood that this guy is being very serious right now and being very genuine about it. So I I kept walking and then, but then my friend walked in, but he saw a little bit of that interaction, and he started getting upset with her and being a little aggressive with her. And yeah, I had to go over and grab him and pull him aside, like, I'm so sorry, guys, whatever. And I had to, you know, tell them, like, listen, man, this isn't okay because you know, I did that, that happened. And you know, all they know is someone stepped on their foot and it wasn't okay, and it made it minor hurt or whatever. But you need to understand that I needed them to work. Walk away from the situation and having a different perspective, a different view on those kind of situations happening. You know, so the next time that this might happen to them, they don't just jump to someone was rude or someone was drunk or whatever, was just careless, that they think, hey, wait, maybe this person has a vision condition, and they approach the whole thing differently. And that's like a slow way of you know spreading awareness in some way. But when you go after them and be aggressive about it, like now they're gonna have a bad taste in their mouth about this. You know, they're gonna remember me and this happening, and they're gonna remember aggression behind it. They'll probably forget about the niceness because you know it's like that thing that you know most people feel the need to review a restaurant or whatever and put bad reviews. You know, no one people don't go out of their way to say, great, great, great. Not that it doesn't happen, but they remember the bad times and less of the good times. So, like that's a really like a good thing that I want to come out of this is to start bridging that gap and start developing those relationships and conversations with everyone, you know.

SPEAKER_00 45:01

The part that I would really like, and it happened to me um at church this is just this past weekend. Uh I've started to become more assertive with what I need. And like you said, not in an aggressive manner, but I'm gonna give you two examples. Like um, someone I met a couple new people at church just yesterday. And when they when before they left my side to go about to do what they were doing, I said, Oh, you know, it was really nice meeting you, so and so and so and so. I'm probably not gonna recognize you in the room again. So if you see me, if you would just say, Hey, hey charity, it's Susan, or hey charity, it's so and so. And I'm I'm started to take that approach where I would, I used to hide and be like, oh God, I if I see them again, I'm not gonna recognize them. But they know they know I'm visually impaired and how can they help me? The other thing is when I leave church, someone it's the nicest thing. We have door openers, and someone opens the door for me and my guide dog all the time. And you would think that's like the best thing in the world for a guide dog handler. It's not. I use the door to orient myself in and out of the door so I don't run into the door. I have the door handle. Yeah. And so I'm starting to try to educate people like, I know you're trying to help me, but if you want to help me, close the door. Like, close the door in my face.

SPEAKER_01 46:30

It's how to show up correctly, right? Like that's you know, something I um I don't know. Did did you ever go through my red eyes pigment toes guide? I did. I did look at it, yeah. Okay, they have a whole section like on things like this, right? And the point of it being is like how to walk next to us and not guiding, guiding like it being in like metaphorically, like being in front of us and guiding us like that, because I mean you don't know what we need, and you don't ever want to assume it's like you know, to be called out like that is you know, it to I and it's just we we're already losing our independence. So to have someone on their own accord take away more of it, and I know they're just trying to help, and that's a hard balance because you can't flip out at people because they're just trying to be there for you, you know, and that's a really hard distinction that you have to like. I remember my skin would start crawling, I would start like heating up because you know, you never see yourself in this position, and you know, they're just trying to help you, but then you're looking at yourself like I'm the person that needs help now, you know. And that's it's a hard thing for all of us usually to ask for help. I mean, not just the you know, people in the vision loss community, but in the entire world, no one likes asking for help.

SPEAKER_03 47:44

Yeah, you know.

SPEAKER_01 47:46

But so awesome. Um, did you want to say something else?

SPEAKER_00 47:50

No, I'm no. I it's just something that I know that we're gonna get into. All of the things that we've kind of just touched with an umbrella, we're gonna dive deeper into.

SPEAKER_02 48:02

Sure.

SPEAKER_00 48:03

And there's so many topics that have so many questions, but it's for another day and another time.

SPEAKER_01 48:08

That's right. We have so much time to talk about this. I hope you guys that are listening are here for the long run because you're gonna hear so much ridiculousness that's gonna happen on here. Because it just it just it already happens like outside of it to constantly like we should have been recording, and it just happened before this. Oh my god, I should have been recording that. I I totally was, and I cannot. Yeah, Austin's really done you guys.

SPEAKER_00 48:31

Yeah, yeah. And the thing is, he's the tech guy, so he's really good about capturing my ridiculousness and not his own. Like, so yeah, whatever. Yeah, okay.

SPEAKER_01 48:40

Uh so that's how we're gonna wrap it up today, guys. We just want to give you a quick intro, kind of who we are, a little bit of our background, let you know that we are indeed a part of the vision loss uh community. We are not just two people that are here to pretend that we know things. And most of the time, we're gonna be speaking on our own experiences and what we have learned and what we know and from the guests that we have on here, um, the things that we find out along the way. So we would invite you to go ahead and get online if you have Instagram at us at at Central Vision Podcast, and then on Facebook, it's the same exact thing Facebook.com slash Central Vision Podcast, also our website, centralvision podcast.com. I think you guys get it. YouTube, Central Vision Podcast. But we're gonna be on every platform. And um, when we release this, we will also be releasing another episode or two so you guys can jump right into what we're about, what we're doing, and all those fun things. So we hope you enjoyed yourselves. You have a great time. We hope you share this. You hope that you write into us. If you have any questions, if there's things that you want to ask, if you're someone that's cited or in the Vision Lost community, please message us. Please send us an email at Central Podcentralvision Podcast at gmail.com. We'd love to hear from you. We'd love to put it up on our podcast and answer the questions to the best of our knowledge. And um, I mean, who knows? Maybe one of your questions will line up with a guest that we have on, and we can ask someone that is actually maybe experienced that that has some expertise and things like that. So, unless you have anything else, Charity.

SPEAKER_00 50:05

No, I'm great. Thanks for listening.

SPEAKER_01 50:07

Thanks for listening, guys. We'll check back with you soon.