Central Vision Podcast
Central Vision Podcast is a conversation about life through a different perspective.
Hosted by Austin and Charity, the Central Vision Podcast brings together people who are blind, have low vision, and the family members, friends, professionals, and advocates who share the journey. Through honest conversations, humor, personal stories, and practical discussions, we explore what it really means to navigate work, relationships, technology, travel, accessibility, independence, and everything in between.
Some episodes feature inspiring guests with unique experiences. Others dive into everyday challenges, awkward moments, helpful tips, or the conversations that don't happen often enough. We believe that sharing real experiences builds confidence, creates understanding, and reminds people they're not alone.
Whether you're living with vision loss, supporting someone who is, or simply want to see the world from a different perspective, there's a seat at the table.
New episodes every week.
Central Vision Podcast
Eyece Breaker: Alexis on Vision Loss, Independence & One Very Hairy Target Encounter
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Episode 3 — Eyece Breaker: Alexis on Vision Loss, Independence & One Very Hairy Target Encounter
This week, Austin and Charity welcome 13-year-old Alexis, August’s Rare Perspective Co Eyece Breaker feature, for a conversation that starts with one of the funniest vision-loss stories we’ve heard yet — and ends up going much deeper.
While shopping at Target on a bad vision day, Alexis was feeling her way through a clothing rack when she found what she thought might be an unusually hairy, slightly greasy fur coat.
It was not a coat.
It was a man’s arm.
From there, Alexis takes us through what life has looked like since being diagnosed with retinitis pigmentosa in 2024. She talks openly about using a white cane at school, learning Braille and JAWS, orientation and mobility training, dealing with classmates who don’t always understand blindness, and the family and friends who have helped her approach vision loss without letting it define what she can do.
And Alexis is doing plenty.
From tandem cycling and sailing to rock climbing, creative writing, baking and plans to play blind hockey, she shares what she’s learned about independence, adaptation and finding another way to do the things that matter to you.
She also takes us back to her RP diagnosis at just 11 years old — hearing that she was “going blind” while still being able to see, learning for the first time that blindness exists on a spectrum, and eventually realizing that losing vision may change how she does things without changing who she is.
It’s funny, honest and surprisingly powerful — and a pretty great reminder that sometimes the difference between “I can’t do that” and “how can I do that?” is simply having the right people around you.
👕 MEET ALEXIS + THE EYECE BREAKER
Read Alexis’s story, hear it in her own voice and explore the Eyece Breaker features from Rare Perspective Co:
https://rareperspectiveco.com/pages/eyece-breaker-alexis-aug-2026
Have your own ridiculous, awkward or impossible-to-make-up story from life with blindness or vision loss?
Submit your Eyece Breaker story:
https://rareperspectiveco.com/submit
Every Eyece Breaker purchase helps support the Foundation Fighting Blindness and its mission to fund research, education and advocacy for people affected by inherited retinal diseases.
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🎙️ CENTRAL VISION PODCAST
Central Vision Podcast is a conversation about life through a different perspective — bringing together people who are blind or have low vision, along with the families, friends, professionals and advocates who share the journey.
🌐 Website:
https://centralvisionpodcast.com
📺 YouTube:
https://youtube.com/@centralvisionpodcast
📸 Instagram:
https://instagram.com/centralvisionpodcast
📘 Facebook:
https://facebook.com/centralvisionpodcast
🎵 TikTok:
https://tiktok.com/@centralvisionpodcast
If you enjoyed the episode, follow or subscribe, leave us a rating or review, and share it with someone who should hear it.
Have a question about blindness, low vision or something you’ve always wanted to ask? Send us a message. Your question may become part of a future episode.
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👕 RARE PERSPECTIVE CO
Apparel and storytelling created to shift how blindness and low vision are seen — through honest conversation, humor, visibility and perspective.
🌐 Rare Perspective Co:
https://rareperspectiveco.com
📸 Instagram:
https://instagram.com/rareperspectiveco
New episodes of Central Vision Podcast every Tuesday.
Learn more and listen at www.centralvisionpodcast.com
Music licensed through Soundstripe.
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And I see like a grown man standing there. Like, apparently he like stuck, like his hand was like there with like all the rest of the stuff.
SPEAKER_00Oh my god, it was in the right.
SPEAKER_06I felt his very, very hairy arm.
SPEAKER_05Hey everyone, I'm Charity.
SPEAKER_01And I'm Austin. Welcome to the Central Vision Podcast.
SPEAKER_05We'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_01We'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_05So 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_01Today we have brought a special guest on named Alexis, and we are doing something new this week. So for those of you who don't know, I run a brand called Rare Perspective Co. And what that is, is this apparel brand that is built for the vision loss and blind community. However, what I've done is created a whole feature called the Icebreaker. Now, what we do is we bring in people and we let them tell their story, these humorous, hilarious, funny stories, things that happen to all of us, those things that we can never ever make up. And when we tell people, they go no way. So that is what we do with the feature. We give someone a place to tell the story. I've slap it on a shirt for them. I give them a full feature on my website where they can tell us about the story, tell us a little bit about themselves, and then they can wear the shirt around and people can pick up the shirt. It supports the FFB, but they can scan that code and see your story and all these fun things. So we want to try something new where we're gonna start bringing on our icebreaker features once a month. So this month is Alexis. So we're gonna have Alexis tell us a little bit about who she is, where she's from, what she has personally, what kind of a vision loss condition that she has, and then we're gonna go from there and talk about her icebreaker story that is absolutely absurdly out of control. So Alexis, tell us a little bit about yourself.
SPEAKER_06Well, I'm 13 and I'm from Missouri, and I have retinitis pigmentosa, and I was diagnosed in 2024, and my story happened about a year ago.
SPEAKER_01So you were diagnosed in 2024. What um do you do you know your degree of vision for everyone watching and listening that also might have?
SPEAKER_06Yeah, it's like all together, like one both of my eyes are like different because I have like a good eye and a bad eye. But my my bad eye is like 2,500.
SPEAKER_01Okay. Well, so what about like your degree? So I think charity has maybe three degrees or something along those lines.
SPEAKER_05I have about three. Yeah, I have about three degrees of central vision. Do you know what your like how big your tunnel is? Yeah.
SPEAKER_06It's not very big. I don't know the degrees, but it's not very big.
SPEAKER_01Okay, okay. Uh, which eye is worse for you? Mine's my right eye. Your left eye? Okay. Charity, do you have a horse eye?
SPEAKER_05Yeah, my left eye is like, it doesn't hardly exist. Any vision I have is usually contributed by my right eye. Yeah. Okay.
SPEAKER_01We're twins. Right on. Yeah. My right eye, like, I'll have a I was just grocery shopping and I'm sitting there closing one eye and then going, I I have to look insane to everyone around me. Like, you know, like what's this eye look like? What's this eye look like? Like, you know, like, oh, where did you come from? So awesome. All right. So then let's just get in to your icebreaker story. So uh everyone listening, what I do is I tell her to go ahead and tell it in her exact I we want to feel like we're there. And what she's gonna say, I want you to feel like you're using the senses that she's gonna talk about what she used in this. So Alexis, go ahead and tell us this awesome story.
SPEAKER_06Okay, so I was with my best friend Elsie, and we were at Target, and we were like looking for different things, so we split off and like I forgot where she went. I think she went to like the bathing states or the makeup or something, but I was at like the women's clothes and I was like looking through like the clearance aisle of like it because I always have cool like stuff, and I was having like a bad eye day, and like the light sensitivity was really bad, so I was just like closing my eyes while looking for it. So I was just like feeling along the rack, and I saw it at this like one weird piece of clothing, and like oh I saw and I'm like feeling it, I'm like petting it and like feeling it, and it's like it feels so weird, it's like such thin, like I thought it was at like a weird fur coat because I've like seen weird fur coats and stuff, and it felt like an animal skin, and it was like really thin hair, and it was super weird and like greasy and stuff. So I am about to open my eyes, like look at whatever like monstrosity this is, and then I hear just like a hello, like a hello. It was like so confused, and I opened my eyes and I see like a grown man standing there. Like apparently he like stuck like his hand like through the rack to like look at something, and his hand was like there with like all the rest of the stuff.
SPEAKER_00Oh my god, it was in the rack.
SPEAKER_06I felt like his very, very hairy arm, and I was uh I was about to apologize because like what on earth was I doing, but I couldn't like speak, so I just like ran away.
SPEAKER_01So okay, I did not realize it was in the rack. So the the arm was just like it was hanging where it was supposed to be, but okay, so I have to ask, like, what aisle did you think you were in where you were like feeling animal skin?
SPEAKER_06I'm trying to think I was like, I thought it was like a fur coat. I was in like the women's clearance section. It like I mean, I could feel why it wasn't selling very well. Like it was it was not a fur coat.
SPEAKER_01That is absolutely amazing. That's um the it makes me want to go to Target and find this piece of like I'll just walk up and say my friend was telling me about this very um animal, it was a very greasy, hairy fur coat. Do you have those in stock? Sounds awesome.
SPEAKER_05So that's all I have to say the guy had his hand in the rack, so it's his fault. Like it's his fault that he got petted. It's his it's not yours, it's his. So I took his arm out of the rack.
SPEAKER_01I'm getting this Narnia picture, you know, like the wardrobe and like just reaching through, and it's like, whoa, man.
SPEAKER_06Like I'm on the other side of the closet.
SPEAKER_01Like and so how long ago did this happen?
SPEAKER_06Um, about a year ago.
SPEAKER_01About a year ago, okay.
SPEAKER_06And I haven't I hadn't really told anyone about it. Like I didn't tell my friend when I ran off to tell her what happened. I just I went there and I was like, oh, I wanted to look at makeup with you. Like I didn't tell anyone because I was very embarrassed.
SPEAKER_01Have you been telling the story since?
SPEAKER_06Um, well, we found um the icebreaker thing through Facebook, through one of the uh other features groups. Yeah.
SPEAKER_04Yeah.
SPEAKER_06And we went on the website and we like looked at the cool like icebreaker featured thing. We thought it was super cool and stuff. And my mom was like, Do you have any like crazy stories? I'm like, Oh, should I let me tell you? Like, should I say this one? So I told her, and she would not stop laughing. And she had to bring my dad in, she had to bring a whole family in for me to tell them.
SPEAKER_01That's amazing. That's so they didn't know about it until then.
SPEAKER_06No, no one knew about it except me and that man.
SPEAKER_01You know, there's a lot of perks of me doing like the icebreaker and whatnot, and like cool things I think about. I never think about like this is your coming out story of something that was so crazy that happened to you. So I'm full of vision loss. That's amazing. That's that's awesome. Um what uh so I mean that's a bold move. You didn't tell anyone, and now you just said, hey, I'm gonna put it online on a website on social media, I'm gonna put it on a t-shirt. So have you like worn the shirt around your friends to where they've gone like, wait a minute?
SPEAKER_06I haven't worn it yet because I just got it the other day.
SPEAKER_01Okay, yeah.
SPEAKER_06So it just came in like a couple days ago, and I was saving it for this because I didn't want to get it dirty because I have a tendency to do that. I have a tendency to like stain things. So I was planning on waiting. But like wearing this to like school and stuff will be super interesting.
SPEAKER_01Yes, and I will be oh, you're gonna have to share about that and tell us about that. That's gonna be. I just imagine your friends like, you know, like, hey, look at my shirt, and then you turn around and they're just like that grotesque look. Like, are you serious? Like that's awesome. Okay, so what what did your friend say? I'm assuming you told her immediately, like, you inevitably what just happened. What did she say?
SPEAKER_06So I didn't tell her immediately.
SPEAKER_01Oh my goodness.
SPEAKER_06I didn't tell I didn't tell anyone, like anyone. But I told her after I submitted it, and she was like mortified. Like, wait, I was there. Like, wait.
SPEAKER_01Does so let's actually talk about that. Do so does your I mean, assuming your friend knows about your vision and whatnot, right? Okay, like does for you, because you know, you're obviously a very different age than charity and I. And what do you do have a hard time telling people? Does it is it hard for you to explain it to others, or are you like kind of self-conscious about it? Like what how is it for you?
SPEAKER_06Um, well, everyone knows about it because I use my cane at school.
SPEAKER_01Okay, right on.
SPEAKER_06How good for you? Everyone knows me and stuff.
SPEAKER_04That's awesome.
SPEAKER_06And some people aren't the nicest about it, but most people are kind of chill about it.
SPEAKER_03Yeah.
SPEAKER_06And stuff. What I've learned is that the older kids are very overaccommodating. Like the people in the grade above me are always like pushing everybody out of the way. But like the younger kids who are like younger than me, they're like always like not moving. Like not walking towards them.
SPEAKER_04That's not good.
SPEAKER_06Like I don't see them, and then I'm like, boom. And stuff, they're like, watch where you're going. I'm like, okay. So what grade are you in, Alexis? Um, I'm gonna be going into eighth grade this year. Okay.
SPEAKER_05So you're you're in the you'll be going into the top level of middle school.
SPEAKER_06Yeah.
unknownYeah.
SPEAKER_05Okay.
SPEAKER_06Last year at the school.
SPEAKER_05Yeah. Awesome.
SPEAKER_01You're thinking junior higher there, aren't you? Okay. So wow, you use a cane already. So I myself have not gotten to a cane or a guide dog. At times I think I should have a cane. Uh, but I just I actually have one. But I just it it's not like I've done training. So have you already gone through training and whatnot?
SPEAKER_06Um, well, I s I d I got my cane in sixth grade. Like on my birthday was the first day I met my um OM.
SPEAKER_04Okay.
SPEAKER_06On my like 12th birthday, I met my O and M and stuff. And it was the first time I ever used a cane. So like I've been using it throughout the entire seventh grade. And I'm still learning because I have a lot to learn to get to a point where I'm able to like do it like very like good. But yeah, I've been going through that training and stuff, and I just got a new um OM and a new vision teacher. So it's it's gonna be different because my my old vision teacher was online. Oh she live she lived like in Florida, it was totally insane. Like we were doing everything online where she was like teaching me Braille online and she was teaching me everything, and it was really like difficult.
SPEAKER_04That's interesting, yeah.
SPEAKER_06That's very interesting. My new vision teacher is gonna be in person, so that'll be should be.
SPEAKER_01That I mean, goodness, we're already having issues with our vision. Now you want us to do it online. That's that doesn't seem was she teaching like the cane online too?
SPEAKER_06No, I had a OM instructor who would come in, okay, and every Monday he would come in during my vision period and he would like take me out and like teach me and stuff.
SPEAKER_01So we had to like period in school for this.
SPEAKER_06Yeah, I didn't do electives. Oh so while other kids were doing electives, I had my vision period. So that was last year, it was every fifth hour.
SPEAKER_04Okay.
SPEAKER_06And every day throughout the week, I would learn either braille or uh accessibility on my computer. And then on Mondays during fifth period, like my OM would like take me out. We'd like work on like street crossings or like something like that.
SPEAKER_05What kind of accessibility what kind of accessibility tools are they teaching you for electronics?
SPEAKER_06Well, mostly Jaws. Jaws? That's great. Oh, that's awesome. Yeah, that's like all we've been learning on the computer. I personally hate Jaws. Yeah, it's just very, very robotic. Yes. And it's very loud. And it's like hard to connect like headphones or whatever to the computer. So I don't use Jaws on a regular basis because I haven't learned much about it yet. But when I do use it, it's very annoying. It won't shut up. Like it'll say every single little thing. It won't only say the important stuff. Yeah.
SPEAKER_01So charity, you you you're you're familiar with Jaws, right?
SPEAKER_05So I'm familiar with Jaws, and I am to the point where I need to start using it, and I need the training on it. So I find it fascinating. While I know it's irritating, you're in a great position to be to be learning it when you are. Do you do you currently use voiceover?
SPEAKER_06Um, sometimes not always. It's I just have really, really big text on my phone.
SPEAKER_01Same here.
SPEAKER_06Yeah, me too.
unknownYeah.
SPEAKER_01What um, charity, since I mean you at least have a little bit of familiarity with it. I haven't dove into it. I I know what it sounds like, so I've heard it come through when I talk to people, but can you explain for our listeners what Jaws actually is or yourself, Alexis? Like if I don't know who of you knows more about it, but do you explain actually what it is and what it's doing?
SPEAKER_05So Alexis might actually know more than me because she has been trained on it, but it is a screen reader for uh a computer as opposed to it's almost like voiceover for a computer.
SPEAKER_06Yeah.
SPEAKER_05Would would you agree with that, Alexis?
SPEAKER_06Yeah, I'd say, yeah, it's a screen reader. Yeah. And there are different controls that you can use for Jaws, like on the keyboard and stuff that are different than what you use on a regular keyboard. So like there's like my computer has like a Jaws key, and I think that's like the caps lock button. So like when I hit caps lock and then something that automatically makes like a Jaws command.
SPEAKER_05Yeah. It's almost like a voiceover on your phone has different finger commands as well. Like there's triple swipe, double tap, two finger tap. Yeah. And yeah. So is it hard to learn the keyboard commands on Jaws?
SPEAKER_06Yeah, I have a memory of like a goldfish. So I forget the commands a lot. Yeah. I I have to like make rhymes in my head and stuff. So I have to do like F4, like close the door of like when you hit F4, it can like close the tab and stuff like that.
SPEAKER_01I love that so much. Yeah, me too.
SPEAKER_06That's also how I remember my braille signs, too.
SPEAKER_01Okay.
SPEAKER_02So are you fluent in braille?
SPEAKER_06Yeah. I'm not fluent, but I've been getting very good at it. So I like I know all the letters in the alphabet, like I know all the numbers. I just I need to learn like contractions. I need to learn like I need to like get faster at reading it and stuff. And I'm very, I'm very good at it for how long I've been doing it. I've only been doing it for about a year and a half, maybe a year, a year and a half. And um yeah, also I don't do bra a lot because I have Ailers Danlos, so I break my arm a lot.
SPEAKER_01Really? I never heard more.
SPEAKER_06Ailers Danlos syndrome?
SPEAKER_01Yeah.
SPEAKER_06Okay, that's it's uh like a hypermobility syndrome.
SPEAKER_01That's a new one too.
SPEAKER_05Is that is that is your is the RP part of that syndrome or is that separate? No. Okay. Okay.
SPEAKER_06That's separate. So it's a connective tissue disorder.
unknownYeah.
SPEAKER_01So you run into things all the time already.
SPEAKER_06Yeah. So most of the time I fall down most of most of the time when I break my arm, I like fall downstairs.
SPEAKER_01Oh my goodness.
SPEAKER_06But the first time I ever broke my arm had nothing to do with either I just I fell off a chair. I fell off a chair. Yeah, that's uh and it it's like a like a break break, like it it's not just like dislocation or I've well I've never broken, broken anything, but I get like hairline fractures, fractures. I get like fractures, and I get like growth plate stuff.
SPEAKER_01Okay.
SPEAKER_06And but this past June, I did dislocate my knee twice. Wow. Oh my god in like 10 minutes. Oh my goodness. It was uh so we went to the ER and they were like, oh, just like we're this huge brace that you can't move your knee in at all. So that was just fantastic. I couldn't like so I got a different brace after that, but I couldn't swim. I couldn't, like, I had crutches, like it was hard.
SPEAKER_01Okay, crutches, and then I'm trying to picture you. I have this amazing image of you with a cane with crutches, like just I know, I couldn't use my cane, it was horrible. Wow. I mean, I guess the crutches, I mean, could you know it could kind of ish. I mean a wheelchair probably would have been better.
SPEAKER_06I mean, I was in a wheelchair for a little bit.
SPEAKER_01Okay.
SPEAKER_06Um, last year for another disease. Oh my gosh. Yeah. So I had amps, amplified musculoskeletal pain syndrome. So it's a nerve disease. So it amplifies the pain that so your nerves get confused, and they think every little like every little just like poop is like a threat. Oh my god. So they send pain signals to your brain. So like everything hurts, even them just like sitting there, like them touching the ground, like my ankles, it was in my ankles, so I had to sit in a wheelchair for a couple months.
SPEAKER_01Wow. And that okay, so for everyone listening, right? So RP will cause you. I wear permanent like cosmic galaxy bruises on my thighs at all time because I run into my bed frame constantly, my counter constantly. I literally I have to re-glue my countertop down on my cabinets right now because I I ran into it so hard that I lifted the whole counter up. And oh my gosh, it you run into everything all the time. You trip on things, you kick things. So putting in perspective what Alexis deals with is wild. That that is insane. That would that um that is unfair.
SPEAKER_06I remember one time I was at a pet shop and we were looking around because we were getting like food for my lizard, and we I was going through the different aisles, and I was in my wheelchair, and again, I was not able to use my cane in a wheelchair. I ran to a display.
SPEAKER_01Oh, and knocked it over. Fellow. Just just gone. See, I mean, you might as well had your cane and just did some like jousting and just I know, it'll joust into my gut.
SPEAKER_06It'll like joust into my cane.
SPEAKER_01They're gonna have a whole nother problem. Oh no. Wow. That's um, so let me ask you, like what you know, it's it's not, you know, you're our first guest as well, but we get to ask you from a different perspective, how does your family like treat this to where like you know, that's that's gotta I keep thinking about what my if this would have happened to me when I was younger, I was 25 when this happened to me when my vision started taking over and whatnot. But what it would have been like raising a child and getting him through like such a I mean, that's right when they used to say, like, oh, you're a kid, you'll like quit crying, like that makes you stronger, like that you'll you'll get over it, whatever it makes you tough, you know, whatever. It'd be very hard to raise. A child that is constantly like running into things. I would imagine it feels helpless. Like from your perspective, like how has your family treated it? Like how you know what's gone on with that?
SPEAKER_06I mean, they've been amazing.
SPEAKER_01Yeah.
SPEAKER_06Like that's amazing. My family, they're really good at accommodation. And like we've definitely accommodated a lot throughout the house, like and stuff. I still run into things because that's a given.
SPEAKER_04But of course.
SPEAKER_06But like my family's been really good at it. And like I like we like make jokes about it and stuff. And I've gotten to the point where I'm like comfortable just like with like using like I use my cane a lot, like around them. Like I don't use it at home, but like when I'm out with them, like I'll yeah, like I'll use my cane, I'll use like my dad as human guide and stuff. I'll like they've been really, really good about it. Like I could not have asked for like better people to like support what I'm going through because they've been absolutely amazing at it.
SPEAKER_05Can you tell me a little bit about what brought about your RP diagnosis? Like what what were you experiencing where you said or your parents said we need to take you to the doctor because something's going on here?
SPEAKER_06So I was in sixth grade. It was like the beginning to middle of sixth grade and stuff. Like I think I was diagnosed in like November maybe. So it was like August to Yeah, a couple months only. But I was constantly running into things at school. Yeah. Because I know my house inside out. So right. And I mean I'm already really clumsy like overall. So I run into stuff a lot, but like I was running into a lot of stuff at school. Like also they could tell like my peripheral vision was really weird. Like I wouldn't see someone like going past me and stuff. Yeah. And I wouldn't, I wouldn't see a lot of stuff. And I already had a scheduled eye appointment and stuff. Like I already had a scheduled eye appointment.
SPEAKER_05Yeah.
SPEAKER_06So it's not like we like thought like oh, this is a problem. Like we need to like go out of our way to schedule something. So I had a scheduled eye appointment, we brought it up, like that was like an insane day too. Because there was three or four different doctors that day.
SPEAKER_02Mm-hmm.
SPEAKER_06And stuff like I get picked up early from school to go to an eye appointment. Like, I love my eye doctor, but I don't see her anymore. I've leveled up. Um yeah.
SPEAKER_03That's it.
SPEAKER_06Yeah, leveled up. We've all leveled up.
SPEAKER_03Yep.
SPEAKER_06Yeah. We got like premium, like we got the top.
SPEAKER_01Mm-hmm. RP plus is what we call it.
SPEAKER_06Yep. Yeah. So I go to her and I'm like, oh, like I've been bumping into a lot of stuff. I can't see the TV. I get a lot of headaches. Like, it's been really weird and stuff. And she's like, you put that huge thing on your face. And they switch through all the different like lenses of what you could use for.
SPEAKER_01One or two, two or three, three or four.
SPEAKER_06Which one's better? One or two or three or four or five or six or like whatever. And stuff. And I'm like, um, none of them do anything and stuff. And she's like, that's interesting. Cause I've always had like a relatively steady, like I've always had glasses since like preschool kindergarten. Like I've always had glasses. And it changes every year or so. But I've always had like a steady-ish prescription. So I would be like, She was like, This is so weird. Like none of this works. Like, I'm gonna send you to someone else and stuff. So later we go to like a different eye doctor. I don't think he's more like higher up in like the doctor hierarchy.
SPEAKER_02Sure.
SPEAKER_06But he's like her comrade, her colleague. So we go to him, he's like, hmm, this is weird. I'm gonna send you to someone else. So he's uh this guy's a little higher up. So we go to the retina institute and stuff. Because they're specialists. They were thinking like it has something to do with my retina, which they were right. But um, so I go to him, he was nice and stuff, and they decided to do genetic testing. They were thinking between a few things, but they never like said red and ice pigmentosa. They were saying a bunch of stuff that was very similar, like Rodcone syndrome, yeah, like they also thought like maybe Stargards, like a bunch of like the similar stuff, yeah, but not quite RP. So they do genetic testing with Wash U. And I kind of like so I have my eye dy eyes dilated like three times that day.
SPEAKER_04Oh yeah, it's wild.
SPEAKER_06So I don't I don't go back to school. So yeah, I don't go back to school, obviously. And so I go home. It takes like a week or so, a week, two weeks. So my genetic testing comes back, they say, Oh, like we go back, and they're like to the retina institute, you have retinitis pigmentosa, and I am like English, and they're like, Oh, right, right. It's like that's total, like it sounds like pig Latin. Like, it sounds insane and stuff. And I'm like, and then they're like, Well, they tell you all the horrible stuff about it, it's progressive, you might go like completely blind, you'll like they tell you all the horrible stuff about it.
SPEAKER_00I know it's so bad.
SPEAKER_06There's no there's no way to fix it. Like, there's just like all treatment, you're cooked, basically. Yeah, you're cooked. Yeah, like you're done for.
SPEAKER_01What was going through your mind when that happened? Because that is something that each and every single one of us, whether it be RP or another IRD or another vision condition, that we walk into a doctor's office and they use all this medical jargon, and it's I mean, they're just doing their job, but you're just informing us of things that have detrimentally changed our the course of our life. And we have no idea what to do about it. It's very debilitating, it could be depressing and things like that, but everyone's story is a little bit different. Like, what for you? What do you like? What were you feeling?
SPEAKER_06Um, I didn't quite understand it. They were just using a lot of big words that I did not know. So I was just letting them talk, letting my parents listen. Like my parents have a very good like poker face, so I couldn't tell if they were like sad or happy about it.
SPEAKER_01Sure.
SPEAKER_06So we get in the car, we're going home. Like, so at that point, so that's we're at the ophthalmologist, and she's telling us that. Like, that we that I have RP. And so they kind of use like smaller words, like to kind of condense it, they summarize it to like, well, you're going blind and stuff. And in my head, I just kind of wasn't it kind of didn't make sense because like I could I can I could see.
SPEAKER_04Right, yeah.
SPEAKER_06Um I could see so I was confused and I didn't quite understand how blindness was a spectrum. I just thought if you were blind because I was 11. Like if you were blind, you couldn't you were blind.
SPEAKER_01That's what I thought too. I was the same way. Yeah.
SPEAKER_06Yeah, Austin and I talked about just the other day. Yeah, if you were blind, you couldn't see anything, it was black, like and now I've learned that if you're blind, you like if you're completely blind, like if you're completely blind, there's still you can still see some stuff.
SPEAKER_01Sure.
SPEAKER_06Most people who are blind aren't completely blind. Yeah, but you have a lot of friends.
SPEAKER_0110%. 10% of the world is actually fully nothing. And that and that's it. And that's not 10% of the world, it's 10% of the people who have vision condition issues, vision loss, blindness. It's only 10% of them that are actually fully blind.
SPEAKER_05Yeah. Right. It's overwhelming. Yeah. And that information is overwhelming as an adult. Um, I was diagnosed in my 20s, and it's overwhelming as an adult. I I just commend you for how you seem to handle it, and you're you're so young, and you just you seem to handle it so well.
SPEAKER_06Um, I think mostly. I think the reason that I've been able to like get through relatively like fine is because of like all the amazing people that I've met who have told me that it's not gonna make me less, it's not gonna change who I am as a person. It might change what I do, it might change what I'm able to do, it might change like how I live, but it's not gonna change like me. So learning that was I remember when I was little, I would like think like, oh, if I went blind someday, I'm gonna need to practice. So I would close my eyes and I would walk around my house and I would bump into them like things. Yeah, I've done it. I did it. Like close my eyes and like walk around like feeling everything. So I was horrible at it. But now that I'm like actually blind, it's hilarious.
SPEAKER_01That's that's okay. That's just it, it is really crazy. I mean, so do you um I mean, because you get hurt very easy too. Do you play any sports or anything?
SPEAKER_06Do you do I mean anything like so I when I was little I did every sport known to man.
SPEAKER_01Right on, okay.
SPEAKER_06Uh when I was little, like like preschool, not maybe maybe like kindergarten to like second grade, maybe, I did like a bunch of sports with the rec center near us. Okay and stuff. So I did like I did soccer, I did karate, I did swimming, I did ninja, I did everything, but and I did dance at one point, I did tap, like ballet, like jazz, like I did everything. But the one thing that I stuck with is I stuck with gymnastics.
SPEAKER_04Okay.
SPEAKER_06So I did gymnastics for a long time. Not relatively okay-ish at it. Like there were definitely kids in my grade who are able to do like back tucks on the pavement, and I'm like able to do like a cartwheel maybe and stuff. But um I quit that when I was maybe nine or ten because I just I wasn't improving, I wasn't like having fun.
SPEAKER_01Sure.
SPEAKER_06It was like it was boring.
SPEAKER_01At least you tried it though, that's good.
SPEAKER_06Yeah, I did it for multiple years.
SPEAKER_01Okay.
SPEAKER_06But n right now I'm doing tandem cycling with the Delta Gamma Center in St. Louis.
SPEAKER_04Okay.
SPEAKER_06So yeah, it's really fun. I do it every other Thursday and Saturday. So it's really fun. We like we go down to Forest Park and we ride around and it's really enjoyable. And I try to go as often as I can because it's really fun to Yeah.
SPEAKER_01I mean, that'd be great because you don't have to take control, but you could still get to be part of it. Like you still get a pedal.
SPEAKER_06Yeah, I'm not really allowed to ride my bike anymore because last time I rode my bike, I like ran into a trash can.
SPEAKER_01Yeah, but no, that I as much as I love that imagery, but no, don't let's not do that.
SPEAKER_06I like ran straight into a trash can. So it was yeah, so I don't really do that anymore. But I ride on the back with my instructor guy in the front, and he's an awesome um tandem instructor. He's great at it. I love that. Yeah, awesome at the Delta Gamma Center, because I feel like that's one thing that's definitely improving my experience being visually impaired. Because they have like a group for kids. It's called like grads, I think. And um it's like for like kids my age to like so like 13 to like 18, I think.
SPEAKER_01So Delta Gamma, is that um is is that for blind, like the blind community, or where I I'm just not familiar with it. Is that something specific?
SPEAKER_06Um it's for the it's for visually impaired and blind children.
SPEAKER_01Okay, okay.
SPEAKER_06Excellent. So it's supposed to like help them just like accommodate to life. And it also does a lot of really fun activities. Like every month we do a um like a monthly meeting where we do a fun activity. I think the last one we went to was like a god, I don't remember. The last one I remember going to, we went rock climbing, so that was really fun.
SPEAKER_02Okay, that's great.
SPEAKER_06But I just on August 6th, I came back from a trip with them. I went on a trip to uh Chicago with them, and it was really fun. Yeah, we had an amazing time. We did tandem cycling there and stuff, and we had an amazing time, and it they taught us how to be like independent. We made our own food, like we like did our own directions, we like did a bunch of really fun activities and stuff.
SPEAKER_01We had pottery, we did sailing, we went to different like sailing, yes.
SPEAKER_06That's our sailing instructor was blind too.
SPEAKER_01Oh, that is so awesome. That's yeah.
SPEAKER_05I I have to try the tandem cycling because I used to be I used to ride a bike on the street. Like I had a street bike and I would I would ride home from work and it was about 15 miles. I would ride home from work, and then I had to stop and I I hated it. And I have not tried the tandem cycling yet, and I that's actually on my bucket list to do this year. So if you're down on that okay, not with you, Austin. Who's gonna guide? So fun.
SPEAKER_01That's very cool. What are okay? So um I love yeah, we still got some time. So for you know, there might be some mothers, some fathers, and maybe some kids listen to this. Like, what other things do you like to do? Because I mean, sailing is kind of baffling. That's because I've actually always wanted to join one of those big expeditions, like sail across the Atlantic or something like that. Then I can like cut myself down, like I don't know if I'd even be accepted because like what a liability.
SPEAKER_06There's this place in Chicago, and it's it teaches people with disabilities how to sail.
SPEAKER_01That's very cool.
SPEAKER_06Like, you don't need to be blind, but you can like have any disability and they can teach you how to sail. And we had a blind instructor, it was awesome. I like, I I like man the oar. Like I like I was steering the boat and stuff. It was insane, it was so fun.
SPEAKER_01That's awesome.
SPEAKER_06Sailed across one of the lakes. It was amazing.
SPEAKER_01But um, so what else do you like to do? So you like doing tandem. Um, you did some rock climbing. What else do you actually enjoy doing for anyone else out there that wants to see what their kids could do, even with RP or some kind of other IRD or vision loss?
SPEAKER_06I really enjoy baking.
SPEAKER_01Okay.
SPEAKER_06I enjoy I do a lot of creative writing. It's one of my biggest hobbies. I am a published author too, so that's really cool. Good for you.
SPEAKER_01Don't say that lightly. That's amazing. Tell us about that. Yeah, tell us about that. Where is it at?
SPEAKER_06Yeah. So I entered a contest at school. They had this ELA contest. It was like it was extra credit, so obviously I entered. But um, because I kind of I'm not the best at ELA because yeah. But um, I entered the contest. It was like a hundred-word horror story in stuff.
SPEAKER_03Cool.
SPEAKER_06So I entered the contest and I like wrote my a hundred-word horror story, and I got the extra credit, and I and I like I sent it in for the contest, and I totally forgot about it. And like months later, my teacher pulled me aside and like, oh my god, I'm in trouble for something.
SPEAKER_02Yeah.
SPEAKER_06Because teachers like pulled me aside a lot because I'm blind. For anything, that could be anything. For anything, it's like, hey, did you see that trash can? Yeah, it's it's mostly like they forgot to like accommodate one of my assignments, or like they're gonna be out. Or like I remember one of my teachers last year was always like, my class comes second to like math or whatever. Like, we're gonna be doing a lot this week, but also we're gonna be doing a lot in math. So, like, make sure you prioritize you prioritize your math, and you can like have extra time on these assignments, and that was super nice because I stuck at math a lot.
SPEAKER_04Yeah, okay.
SPEAKER_06But um, she followed me aside and she was like, Alexis, remember how you entered that uh writing contest like a couple months ago, you know, that 100 word horror story? I'm like, Yeah, I think so. Why? And she's like, Well, you were one of the people chosen from our school who won, and it was insane. I got like a certificate, and she said, You're gonna be in a book. And it was just a book of all the winning 100 word horror stories that um people sent in. Oh, that's and like my story's in there somewhere, and it it's called The Last One's Left or something, The Last One Left.
SPEAKER_04The last one left.
SPEAKER_06Yeah, it's about like people on the International Space Station and they're seeing the Earth like blow up and stuff. Okay, and like the person who's talking is like the last female left and stuff, and she was like, Is this like the end or is it like something bigger?
SPEAKER_01And yeah, yeah, that's very cool. That it's it's one of my favorite topics and like thrillers and everything like that, and just in general, is space. I love those movies, so it's like super they're alone, there's nothing else there for them. I love that stuff. That's very, very cool. Yeah, that's awesome. That's very cool. Okay, so you like creative writing and baking, which is wild to me. Baking, you have to be out of your mind because listen.
SPEAKER_06Oh, I love baking.
SPEAKER_01Even like you know, I have 10 degrees, which I think I'm pretty proficient, and I've done some baking-ish, like making non-bread and stuff, things like that, like dipping bread in a sense, but flour is not okay. It's not, it's not something I enjoy. You know, just yesterday I was uh refilling my oil bottle that I used on my pans, and I had like a big thing, and I was refilling it, so the caps off. It's already dangerous zone. We are like, you know, very careful right now. But then I slap my cup of water, like, no, I gotta catch that. And of course, I'm trying to catch that, and I caught that. I knock over the open bottle of oil all over the counter. So baking is a disaster in the kitchen for me. I mean, it's like are does your mom just come by and go, again, like you had to bake again.
SPEAKER_06I mean, I bake relatively the same things, like over and over. Like, I'll bake brownies a lot. That's like my favorite thing to bake. And then I'll also bake cornbread and stuff, but I also enjoy like cooking, like I'll cook fish and stuff. Nice, and it's really good, and I love it. Okay, I love like cod.
SPEAKER_01What else do you like doing? So baking, um, apparently sailing you show off, and tandem bike riding. What uh and creative riding. Do you is there anything else? Um, any other kind of activities or things that like um yeah, I really enjoy hockey.
SPEAKER_06I think I'm gonna be oh, you're my girl!
SPEAKER_05You're my girl. Oh, yes. Okay, how many minutes do we have left? We can talk hockey. I am oh, I'm a hockey fan. The Detroit Red Wings all the way. I have uh it's tattooed on my leg. That's how much I love it.
SPEAKER_01Oh my goodness. Do you have a tattoo charity? Oh my god.
SPEAKER_05Yeah, I know.
SPEAKER_01Um so okay, so hockey. Do you uh do you I actually just met someone for the first time at a Foundation Funny Blindness event, and they he showed me he runs the league for us around here in uh central Ohio for hockey for the visually impaired, and they have it's like he goes, You want to see the puck? Like, yeah, and I'm picturing, you know, it in its uh it's ice, I'm picturing it's one of the little pucks, and he hands me this uh I I don't even know it, you know, it's like six inches across, seven inches across, and it's a big piece of metal that's got like a bell inside of it. Yeah, yeah. So that's when you can hear it going across the ice. So like do you do you like to do roller or are you on the ice break?
SPEAKER_06Or are you a wild ice?
SPEAKER_01Oh my god.
SPEAKER_06Are you a player? Okay, so I'm gonna be joining a team.
SPEAKER_04I love it.
SPEAKER_06Oh, good for you. Uh the Nat the Nat like the St. Louis Blues, like blind hockey league.
SPEAKER_04Awesome.
SPEAKER_06That is one of those. And I actually um I learned I really enjoyed hockey when I did it during a sports camp from uh Lighthouse for the Blind.
SPEAKER_04Yeah.
SPEAKER_06Yeah. I did a sports camp with them, and it was like two days. And the first thing we did was we did like ice skating. But they said, Well, you can like try hockey if you want. And they didn't have one of those huge pucks, they had a normal puck, so it was a lot harder.
SPEAKER_04Yeah.
SPEAKER_06But like they gave me a hockey stick and they gave me a puck, and they were like, Okay, hit the wall with it, and I hit the wall with it, and they're like, Wow. And I like did hockey the entire time, and it was super enjoyable, super fun, and I really enjoyed it. And at the end, they were like, Hey, like you want to join our team?
SPEAKER_01Cool.
SPEAKER_06I was in my head. I was like, oh my God, yes. And then and then I was like, I'll think about it.
SPEAKER_01So now I gotta ask, like, what do your parents think about that? Are they like, oh no, you're not?
SPEAKER_06No, no. They want me to join the team.
SPEAKER_01Okay.
SPEAKER_06Um, they definitely want me to like get exercise and like be active and stuff. And I do the tandem cycling, but also I really want to do the hockey because I really enjoyed it, and my sister does ice skating.
SPEAKER_02Okay.
SPEAKER_06So it was like so we already kind of like have like the skating. I did break my arm once skating, so I think they're a little bit.
SPEAKER_01That's where my mind's going, you know what I mean?
SPEAKER_06Like, okay, I didn't skating, but it was just other little worried. But like, yeah, they totally want me to do it. And one of my friends does hockey, so I kind of got to see that, and it looked super fun. And yeah, I'm just gonna be doing that. And I'm really excited to like see like what the differences are between regular hockey and blind hockey.
SPEAKER_01That'll be it's um that's very cool. That's uh it's good to know that there's a lot of things out there that we can do because it's I mean, when we, you know, when this happens to us, and especially you at your age, it's so easy to say no that I can't do this, or it's gonna be too hard, or you know, I'm not gonna be accepted when I do this, or whatever it is. So that's amazing that you do that. That's absolutely amazing. And then your family's completely on board. That's awesome.
SPEAKER_06Yeah, I think that the main reason that I'm doing all this stuff is because I think the difference between saying yes and saying no is the people that you're talking to and hanging out with. And all my friends are super like supportive of me being blind. Like, I don't have that many friends because I'm blind, but the friends that I do have are super supportive and like they don't make it a huge thing.
SPEAKER_04Right. That's awesome.
SPEAKER_06But like also, like my parents are super supportive and they like want me to do what I want to do and stuff, and they're not gonna say, like, oh, you can't do that because you're blind. It's more like we're gonna find a way.
SPEAKER_01That is that is the move right there. It's always it's never that you can't do something, it's just you have to find a different way to do it.
SPEAKER_06Yeah, yeah.
SPEAKER_01I mean, there's obviously exceptions, and I will tell you from my experience, you can still skydive. You just strap up to someone and jump out.
SPEAKER_06I always want to skydive, bungee jump, skydive, like parasail, all the time.
SPEAKER_01Yes, yes. I love skydiving. That's that's awesome. And that's it's same thing. Like you're not in control, you don't got to worry about it. That's uh that's awesome. Um, so we're getting to a point where we're wrapping up here, we're running out of time, but I want to do just like we do for the icebreaker, right? Um, for everyone listening, when I do the icebreaker, I choose someone's story, their hilarious story, and then I put a full feature on my website that lands that exist there forever. And it has a picture of them. You can actually hear them telling their own story with their own voice. You can read their story. There's a questionnaire. And at the end of it, I allow the person that's being featured a moment to say anything that they want that you know is important for them to get out and say to the people that are reading it. So I want to ask you, like Alexis, to where everything we've talked about and things, like you really put out some really good lessons and like what you've gone through and whatnot. If you were talking to either parents or you know, other kids that go through what we're going through, what would you tell them from your experience as far?
SPEAKER_06Um, mostly for like the kids, I would mostly say that like you may think it's gonna be like it's gonna be hard, definitely. No one there are gonna be people who don't accept that you're different and stuff. And there have been people who don't accept that I'm different, and there have been people who don't think I'm blind, and there'll be people that totally love you for who you are, and there are gonna be people actually who think you're amazing, and they think you're super awesome, and they think you like you're not less because of your vision. And they love you and they nothing changes about your personality because you're blind, just that you're who you are, but now you just have like a little quirk. Now you just have a little quirk that makes you different and it makes you unique and makes you who you are, and that makes you equally as awesome as you were before.
SPEAKER_01I love that. That's awesome. Um, and just real quick, Alexis, could you I mean, could you stand up and just show people the back of your shirt and just see so people can see what it looks like? So on the back, everyone, that is her story. You can see it on our website, but that is her story, and it's the punch lines, it's all the fun stuff. It's got her name on it, what uh her diagnosis is, and that QR code will actually take you right to her feature that will live there forever. So anytime you see a QR code out of one of my shirts, you scan it, you'll be able to hear that person telling their story, you'll be able to figure out a little bit more about them and all that fun stuff.
SPEAKER_05So that being said, Well, I had one really quick question. Um do you I mean, you're a cane user, and I know you're not old enough yet, but do you have plans on being a guide dog handler?
SPEAKER_06Yes.
SPEAKER_05Good for you.
SPEAKER_06I plan to once I get my once I get completely proficient in using my cane, and once I'm done with OM training, that I will go on to get a guide dog.
SPEAKER_05I know you have to be 18 in order to get a a dog, but um that's good that you're thinking thinking ahead, and I love that for you. That's awesome.
SPEAKER_06And actually a lot of the foundations I've looked at, you can be 16 and older too. They've kind of brought it down a little bit and stuff. For a lot of them, they've kind of brought it down a little bit. So be 16.
SPEAKER_01Oh my goodness, you can drive a car, but you can't have a guide dog. That's crazy.
SPEAKER_06You can't exactly, it's insane.
SPEAKER_01Yeah, yeah. Okay, well, perfect. Um, we're about out of time. So uh just to wrap this up, guys, this is Alexis again. She was my icebreaker feature with Rare Perspective Co. Um for this month, August. You can check her out at rareperspectiveco.com. You can see her shirt. You can pick up one of her shirts. Every single one of our icebreaker shirts in that collection actually supports a foundation fighting blindness. And you can go and check out her feature, everyone else's feature. You can hear her ridiculous story again and talk about or listen to her talking about petting a weird piece of skin shirt jacket thing at Target. And if you're at Target, make sure you pick one of those jackets up. They're amazing from what I've heard Alexis say. Um, and once again, we are Central Vision Podcast. Make sure you check us out, make sure you check Rare Perspective Co. out. We're on every podcast, major podcast platform. You can check out our videos on YouTube and actually watch us talking. Uh, also go ahead and make sure that you subscribe to us, review us, rate us, all those fun things. Follow our Instagram account, Facebook, TikTok. It's at Central Vision Podcast. And as we try to tell people, if you have any questions about vision loss, maybe you know someone with vision loss, maybe you yourself just have a question and you have vision loss. You know, this is for the sighted and the unsighted communities. Please ask us, send us a DM, send us an email. And it's something that we could very well bring up on our show and talk about it. You know, it's good for everyone to get these questions out so we learn to understand each other a little bit better as every day goes by. So thanks again, guys, for coming to Central Vision Podcast. We'll see you next Tuesday.
