SPEAKER_01 0:00

At one point, I literally took my mirrors off my wall every six months. I couldn't look at myself. I hated myself. I actually gave myself death dates. If I lose my hearing by this time, I don't know that I'm gonna want to be around. If I lose my vision, I'm clocked out. I'm done. And that was such a a hard time. And I realized though that I was wrong.

SPEAKER_03 0:27

Hey everyone, I'm Charity.

SPEAKER_01 0:29

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

SPEAKER_03 0:37

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 0:51

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_03 0:58

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. And last week we got to talk about relationships and dating. And this week we're going to hit a little bit heavier topic. We are going to be talking about mental health and specifically isolation and depression that comes almost hand in hand with vision loss. It can hit everybody, but for the blind and visually impaired community, it seems to be a little bit more prevalent. If you yourself are dealing with maybe heavier thought, you're having a more difficult time. Austin and I are not the experts. And please reach out to a mental health professional to get some help. It's not something to be ashamed of. It's something that I've actually done myself to get me through some more difficult times. And it's just something not to be ashamed of. So we're going to hit on the topic. So let's get right into it. And I wanted to start, Austin, with you. Like on a scale of one to 10 today, where are you? 10 being like you're on top of the world, one being like you're in the weeds, where would you say you are with regard to your mental health?

SPEAKER_01 2:46

Well, if if on top of the world includes climbing stairs, we're screwed. Yes, we are. You know, I'm on like the eighth floor, I'd say today. I I made it that far before I said I'm done bruising my shins. But yeah, to today, today I am I am there. But what what what about you though?

SPEAKER_03 3:06

So yeah, I would I don't know that I'll ever get myself to a ten. I mean, I'm just I've got a lot going on in life, and vision loss is hard. I will every day it's hard, but I I might agree. Today I am I'm an eight, eight point five.

SPEAKER_01 3:23

Eight point five, okay.

SPEAKER_03 3:24

I'm good, yeah.

SPEAKER_01 3:25

Showing me up.

SPEAKER_03 3:26

Yep.

SPEAKER_01 3:27

Okay. But okay, so with with that being said, and it also depends on like where what are you, you know, some people would say my financial life is an eight, but my personal life is or my mental health, right? But overall, I would say I'm an eight. However, that doesn't mean that every single day is an eight. What I think is most important myself is how many of the, like, what's the ratio? Are most days an eight or most days a three? But there are still those days that are bad. And I think a lot of our community probably understands that to where there's some days you wake up and it's like the whole world is out to get you. It's just as soon as you wake up, you knock over that water, and then you get out of bed and you slam your shins onto the bed or whatever your setup in your room is, and then there's something else. You know, there's it just keeps happening, and it seems it sometimes it feels like it's all related to our vision, and it's that's what's out to get us, and then it just becomes daunting and more and more daunting. Would you agree with that?

SPEAKER_03 4:34

I would agree a hundred percent. There have been some um very life altering events in my life that have smacked me down to a two or a three, and I was there, I stayed there for a long time because they weren't just daily event events, they were lifestyle changes that I had to deal with every day for a period of time, and I was stuck there for a while. Um but yeah, I yeah.

SPEAKER_01 5:09

What what kind of when so the the lifestyle changes m made it easier to go or maybe took away these harder days?

SPEAKER_03 5:19

No, actually I had uh two very three very specific, but um two more recently um changes in my life that took a big hit on my mental health. One was um when I had to quit work. And I we'll get in get more into it, but that had a it had a lot to do with um isolation, which we're gonna talk about. And this the second event in my life was just last year, uh just actually the beginning of this year, when I lost my uh most recent guide dog. It there was a period of a year where um I was in a dark spot and my guide dog kind of brought me out of that.

SPEAKER_01 6:07

But sure.

SPEAKER_03 6:08

Yeah.

SPEAKER_01 6:08

Yeah, dogs have the power to do that. It's uh it's actually when I was going through a rather dark period of my life that some of my one of my close personal friends from all the way down to childhood, you know, said, Do you know like the biggest thing I've noticed of what's different with you in your life? I mean, obviously I'm different, I'm not okay, but is you don't have a dog. This is the first time since I've known you as kids that you don't have a dog. Like you need to, I was scared to get another dog, so I was scared of the loss again, you know. So I understand how important you know, pets and my fur baby could be, my little cora.

SPEAKER_03 6:41

It's so hard.

SPEAKER_01 6:43

But in uh in isolation, like within that topic, let's open that up. So I think it's a just a good distinction is being alone versus being lonely. And those are two very different things. And for me, I feel like this isn't going to be an exact definition, but I feel like being alone is a choice for me. That's something I'm choosing to be. I'm alone, but being lonely, truly lonely, that is something that feels like I do not have control over. And that's that's where I tend to feel more uh the harder parts of isolation, I would say, is when I'm truly feeling like I'm lonely. Do you have those kinds of experiences?

SPEAKER_03 7:24

Yes. Um, I would uh wholeheartedly agree with your definition between alone and lonely. Um, but for me, those two tend to go hand in hand. Um I yeah, I like to be surrounded by people. I uh it's so hard. I like to be surrounded by people because I'm very social. And at the same time, I pull myself back from being surrounded by people because it's so hard. But for me, loneliness comes with lack of involvement with people, and whether it be by my own doing or because I can't get out into the world.

SPEAKER_01 8:08

Sure.

SPEAKER_03 8:08

Either way.

SPEAKER_01 8:09

Maybe I ruin that definite. Maybe what it is is alone is physical and lonely is emotional. Maybe that's a better way to put it.

SPEAKER_03 8:17

Yeah, lonely is emotional.

SPEAKER_01 8:18

Yeah, I think though the emotional part, that's what's really the bothersome for me. Because I'm the same exact way. I love being around people, but then at the same time, there's then there's the like, oh, now I'm anxious because I have to be around people. Oh, like where's where you know, where's the middle ground? And I think what makes it worse is well, and you know, we've I think we face this a lot for our community and many other people out there with different things that are going on in their lives, but you truly feel like you're alone because no one else understands it. And you know, us with rare genetic disorders with vision and whatnot, we can't just explain it to someone that they're all of a sudden going to understand and that we're not gonna feel like we're lonely anymore because oh, someone gets it. I mean, we have to get on Facebook or listen to podcasts like this to make us feel like we're not lonely. But inside of every single situation that we're in, whether we be with family or friends or out in public or whatever it is, there's that inevitable feeling that no one around you understands what it's like. And for some reason, you have to do some performative art to not seem like you're not okay or that this isn't actually impacting you.

SPEAKER_03 9:30

Yes. And to me, that is key as well. I feel most um a part of a I feel the least lonely when I am around people who are similar to me, which is uh kind of the reason for the podcast. It's the place that I was in a year ago is what prompted me to want to start the podcast and want to start discussions, and it was because I was surrounded by people who were like me who were visually impaired, and they got it, and I didn't have to explain it to them. And it I wasn't weird, I wasn't not that vision loss is weird, but sometimes I personally feel weird, like I don't feel like I fit in. And I was in an environment where I I completely fit in. I didn't have to explain anything to anyone, and it took away that that feeling of loneliness of being the only one who feels this way.

SPEAKER_01 10:35

Is that uh I I feel like you said that you were because you know, finding that community is important. What's even better is when you find it in person, which can be hard, especially like goodness. Now we have to find a way to all meet up to each other. Do you drive? Nope. Okay. How about you? Do you drive? Nope. I don't drive either. Okay, sweet. So Uber's gonna make a lot of money off of us today. Let's all go here. You know, yes. So where you what you did, so you're in the lions club or something, right? Do you work with the lion? Is that something you do?

SPEAKER_03 11:06

I do work with the Lions Club, but but that was not the environment that I was in. I was at I was at Leader Dogs for the Blind. And yeah, and so I had 15 people there who, besides the instructors who are trained to understand, but I had 15 clients there with me who were in the same situation that I was in. We're all a little bit different, more or less vision, but everyone understood the emotions that go into and and oddly enough, I think. Oh, I want to say everyone in my class had RP.

SPEAKER_02 11:45

Yeah.

SPEAKER_03 11:46

It was very strange. Everyone, uh nope, nope, nope. There was that one that you wanted people to look up that uh you didn't think that there was an actual disease called bird shot. It exists. Just so you know, good friend.

SPEAKER_02 12:00

Oh, charity.

SPEAKER_03 12:01

Yeah, I know I had I was in that environment and it was it it's just breathing easy. It's what I feel like people feel like on a daily basis, but I I was not there before that. I wanted to ask you about um so today you're at an eight. When was the time that you were at your like what gets you off of that eight and into something less?

SPEAKER_01 12:36

Self-worth, circumstantial self-worth, specifically. It's because overall it you know, I tell people ask this kind of thing to me all the time, and it's sometimes it's irritating to be honest, because they'll come up to me and you know keep saying, I'm so proud of you, I'm so proud of you, this and that. Like, dude, I've come so far, I am not who I used to be anymore. And stop like, you know, you're proud of me because of where I was. I need to be you need to be proud of me because of where I was yesterday, not because of where I was 10 years ago, or it wasn't 10, it was a shorter period of time than that. But yeah, it's the circumstantial things, it's the days that you know, maybe I'm feeling pressured because of financial things or something like that. Then I circle into well, why why is this a problem? Well, because you can't drive. Why can I drive? And it's that it's that loop that hits me that always ends up being because of my vision. That's why. Yeah. And it's that self-blame, that self-pity that brings me down. And depending on how long you let it fester, that's that's what it can control, how bad it gets, and uh, you know, how many uh how many days it lasts, things like that. But I have found that the more I allow these things to happen, I think that became very important to me is to not block these things from happening to me, not to try to ignore these things, to let it in, to breathe, and to let it just take over my system and understand it. You know, I there's a show the show lost, which for anyone watching knows that the ending ruined all of us. Doesn't make sense, none of it makes sense, it wasted all of our times, but Jack Shepard in that show, he had this thing. Uh, Kate Austin had asked him, wow, I know the characters very well. Asked him uh to uh how he does this, how he doesn't seem to have any fear with you know doing these crazy things on the beach helping people. He's a doctor, and he said that he was taught this thing to count to five, and that's for five seconds, you let all the fear take over. For five seconds, you acknowledge its existence in your life, and then after that five seconds, you you pull back the reins and you get your your life back. And I kind of do the same thing in a sense, and I found that the more I let that happen, the more I accepted these things, and I became more I was calm about dealing with it. That's when I learned how to actually take care of these things I was going through in my mind, and I learned how to deal with them properly and what didn't work and what didn't work, and the more I did that, the less frequency I have in these bad days in my life. It's because now I have learned to properly approach them.

SPEAKER_03 15:21

And you learn along the way, right? So yeah, you learn a lot, you don't.

SPEAKER_01 15:28

Oh, I I'm sorry, I misheard you. Yes, I learned a lot along the way. I mean, that's yeah, that is crucial. That's the only way it works and you move forward. So I learned, but I only learned by going through. I've always been described as a hard learner, you know, someone who, you know, I'd rather eat pavement on a motorcycle than just be told, don't do that. No, let me test it. And but learning that learning the hard way has taught me invaluable lessons. It's lear making sure I go through those things. That's what taught me to not, you know, you don't touch a stove again when the burner's on, because of what?

SPEAKER_03 16:01

Yeah. I think for myself, I was in a I had when I had to leave my job, I was stripped of my identity. I was stripped of everything I knew about myself, and I completely I mean I had nothing else to blame it on, but my my vision loss. And I will say I was in a very, very um emotionally bad place. I and I sat there for probably four or five years. It was sad. It was um it was depression. I had gone to counseling, but it's not something that can be fixed, it's not, you just literally have to accept it, and I did not want to accept it. And if you if you don't want to accept it, you're not going to accept it, and then you can't move. So I I got through that. I didn't get through it beautifully, but I got through it. And then the the second time was um, like I said, last year. I was given a guide dog last year, and she opened up my world like like never before. And it started to bring me out of it. I could see, and now there was a time period in between the the five years of agony and last year there was a period of time in between, a long period of time in between. But in that period of time, if you asked me where I was on the scale of one to ten, I probably would have put myself at highest five. I I wasn't I wasn't extremely happy, I wasn't fulfilled. And it's not always about happiness, right? It's about being fulfilled, it's about it's about acceptance and being fulfilled and in what contribution you're making to society and feeling good about yourself. But anyway, so last year when I I got my dog and my world opened up, and all of a sudden I was going places, I was doing things, I had this high level of confidence. I had, okay, let's go. Let's I'm I'm gonna go by myself. I'm gonna do this independently. It's it's how I brought to life 2026, the year of hard things. And then all of a sudden in February, uh the rug got pulled out from under me again and I I hit a wall again. And I guess what I would like to talk about is um what it takes to come out of the five-year funk or the or the you know what I hit last earlier in this year.

SPEAKER_01 18:56

Yeah, yeah. Uh no, absolutely. And it took me years to get out of it. I mean, I I honestly don't know how much time passed. It was I was so far gone that I literally don't know how much time actually passed. It it was, I mean, I would say at least five years, maybe longer than that, maybe seven years. It was as soon as that diagnosis hit, my my world crumbled.

SPEAKER_03 19:23

Can I ask what that looks like for you? Like what how that manifested in you?

SPEAKER_01 19:29

Yeah. And I and I want to hit the point of it too and move into that to where you know the diagnosis itself is like almost world-ending, depending on who you are, what kind of support you have on or have around you, which I had amazing support around me, but the diagnosis, I couldn't control myself after that, because all I could think about is my life, or it must be clear to every anyone watching right now. If if you're just being diagnosed, or maybe you're diagnosed recently, or anything in that realm, your life is not over. I was wrong. I was very, very wrong. Please do not think that. Do not ever think your life is over, even if it's not vision loss, if it's something else, your life is not over. You're just you just got knocked down. You need to find a different way to go about life. That's all.

SPEAKER_03 20:16

Agreed. Thank you.

SPEAKER_01 20:18

Yeah, agreed. So that that ruined me, right? Because I uh my professional career had completely just dropped. I mean, fortunately, I was still driving at the time, and that was a little bit easier. And but that that is really the hard thing about progressive vision loss now, everyone. It's different, but progressive vision loss is something that you have to endure every single day, or every time that there's a move and a shift in your vision, you have to endure the next the next stage of what that looks like. And that that's a hard one. You have to be prepared to deal with whatever comes next. And going through that, and then the women thing, then you know, playing that movie in my life of wow, I won't be able to drive my kids to soccer practice, not that I have kids, but should that happen? I'm thinking about things that aren't even on my radar.

SPEAKER_03 21:06

And right, you know, so much can change between now and never, you know, like um so well it makes it makes sense to look forward to those things because we do it with every other aspect of our life. I mean, when we're in high school, we're like, okay, it's not even here yet, but I'm gonna go to college, I'm gonna get this degree, I'm gonna do this career. And for when when you hit that diagnosis, it's just natural to to look forward, just like you do with the good things. It's yeah.

SPEAKER_01 21:39

And it's you know, this has taught this experience has really taught me. I actually just talked to my dad earlier about this in some way, that I have changed the way I look at life. I don't plan ahead like that anymore. I think it's it can be poisonous to do that.

SPEAKER_03 21:52

Yeah, it can.

SPEAKER_01 21:52

And it it can really ruin your expectations of life, and it can really put you down if you live life. chapters ahead of what's going on now and you you miss a lot of what's going on in front of you and you're you're just you're not in the moment I don't think and now I I think this this progressive vision loss this diagnosis has given me an incredible opportunity to start really appreciation appreciating and cherishing the current moment right yeah uh however to to your question what happened I was gonna say I got you off track yeah what happened well worth it uh I what that looked like for me I sunk heavily into a lot of partying and a lot of drinking and a lot of just absolute self-hatred I became not violent towards other people towards myself I you know punching walls breaking knuckles and doing crazy things and at one point I literally took my mirrors off my wall every single mirror for six months and I did not yeah I I couldn't look at myself I hated myself and wow I uh I ended up I didn't watch any TV I didn't watch any shows I didn't play anything didn't play in when I started playing music again the only music I played was to encourage those harder days to make them even worse because I always said this and it's a crazy thing to say but I love rage and anger because it's the only time I felt like I was present that I was truly there to feel it and that that was something it was almost calm during a storm you know it was very odd. So it I took those mirrors off because I didn't want to see myself I turned everything off I stopped watching anything because I I I couldn't focus on anything of I wanted to hate myself. I was so caught up in it that it and it felt right and I actually set this this date on myself so I have Usher syndrome which is the hearing and the vision and the hearing kind of tapered off but I actually gave myself death dates to where if I lose my hearing by this time yeah I don't know that I'm gonna want to be around. If I lose my vision I'm clocked out I'm done I will not be on this earth anymore and that was such uh a hard time and I realized though that I was wrong and the only way I got through that idea was because I pushed and pushed through it but I had to find value in my life outside of the old value I had for my life because it changed it the simple fact is it changed. Yes if I wasn't willing to change I will not be happy so I changed and I found value I got honest with myself and I found value in myself in different worlds and different ways I started approaching life differently I became a different human after it and I'm I'm glad I got I'm glad I went through it but I'm very glad I got through it I look at you today and it's hard for me I I didn't know you I mean I didn't know you the beginning of the year.

SPEAKER_03 24:51

So I I look at you today and I can't imagine the person that you are today being that person that you're talking about. It's it's very it's hard to understand but I personally had to I think like you said you had to give up on one idea of yourself and I had my total identity stripped from me and I had to build a new one and it was hard to build a new identity but it doesn't revolve around vision loss. I mean it kind of does because I mean I'm limited but it doesn't revolve around vision loss. I needed to find a purpose for me again and it wasn't work it wasn't in my job but it did need to be something and it's a long process and it's a hard thing to do and to rebuild your whole that whole idea of your future is hard.

SPEAKER_01 25:53

Yeah but it's doable and so how did you how did you how did you turn it around how did you come out of where you were to get to where you are today which yeah like I said it took it took years and I mean like you said I look back at that I actually have saved videos of some of the dark moments and pictures and like how bad I was and um it gets really bad and I see those and I look at that person not even the actions I just look in the eyes and there's no one there. It's just there's no one there's gone and it's it's honestly terrifying it's heartbreaking to see that person again. But something to get through and you know you just said rebuilding and I think a hard thing for a lot of people when they go through something is they rebuild in the shadow of their old lives and you can't do that. You can't rebuild your because constantly everything you do every move you make to rebuild your life you're comparing it constantly to the life that you had before and that's impossible.

SPEAKER_03 26:49

You can't it's what I was doing. Yes it's what I was doing and it was destroying me.

SPEAKER_01 26:54

Yes absolutely because you only think about the things that you aren't anymore or you don't have anymore instead of focusing on what you're creating now. And that's that was a big change I had to look at and I had to uh you know like mantras and all that kind of stuff but not in the sense of repeating the same thing over and over not doing that but to start acknowledging the things that I have done even if it was something small I got out of bed today. And sometimes getting out of bed is actually especially when you're going through something just the action of getting out of bed is a big thing. And there's actually a thing that I did once I had a whiteboard that was sitting on my mantle in my living room and I had a I put some painter's tape on it and I split it up into two sections. And one was what I got done today and what I or what I got done yesterday and what I'm going to get done today. So then I could always look at like look at all the things you did yesterday and it became like a challenge in a game to where like even if writing things down was making my bed sometimes those were the the little accomplishments are what moved my needle forward. But eventually it started becoming I uh I I I started you know working through a business idea or whatever it may be you know I started doing that so I started to get myself out of a world of discounting myself and hating myself I had to find reasons to love myself and moving myself to a better world was making me love myself again. It was it was giving me hope and my dreams were coming back. I know we just talked about to not plan out but at that time I had to think about seven years ahead like my life could be like this. Imagine me swinging my blind cane around and whistling around and I got some pretty ladies around me. Like that's what my life's gonna be like you know I'm gonna get money again I'm gonna go to the clubs and you know whatever whatever I need to tell myself but that's how I slowly started coming out of it. But also more importantly is I started communicating my issues with people and communicating my life with people and not hiding anymore. It wasn't until you know we've talked about this we've probably talked about a lot is true acceptance of yourself. It's really what moves the needle in these situations. And that is once I be and I and I'll be honest with you it wasn't until probably just before building a perspective that that before that business that was probably right when it finally kicked in because I was finally doing something and chasing a dream. I finally stopped saying that I can't do something or whatever it may be. You know so that was the the long way of getting through all of it.

SPEAKER_03 29:29

But there's there's obviously different things during the day is there anything that you do maybe that like if you hit that moment it's in the middle day and you have because sometimes those thoughts hit you and you just have to say nope not today Satan and that's that's exactly what I had to do um on a much broader scale back then but I still do have to do it today because the thoughts still come to mind I run my foot into something and I'm like there it is it here I like I can't even walk through the house anymore without having shoes on because I'll bust my toes but what I wanted to say is I had habitual thoughts um it was almost like I had an addiction. I had an addiction to telling myself how everything I've lost and just like an addiction I I I've never had a real type of alcohol drug addiction whatever but I understand I've had I I struggled with food for a while. I know it's not the same with you it can be no I'm serious pounds ago will tell you that I had a a food issue and I I fed my I fed my anxiety I fed my sorrow I fed my depression and I had to replace all of my negative thoughts very consciously I had a negative word addiction and I had to replace it with positive thoughts and it was very hard to do but I still have to say when something comes to my mind like you're not you're not capable of doing that. I have to say you may not I have to change it around I have to say something positive to myself like maybe you need to do it differently you can do it but you're gonna have to do it like this. Yeah and I had to change the the negative thought process in my mind which is very hard to do very hard to do. Absolutely again it like you said it is also about opening up and sharing your true thoughts not what you want people to perceive you as because that just feeds it as well I want people to perceive me as someone who doesn't have any issues that's okay with all of this. Yeah and deep down inside I'm like stuffing it down like with with chocolate bars.

SPEAKER_01 31:59

Yeah yeah I get that I'm stuffing it down and no it's it's it's you know what's weird is that's what I wanted people to look me look at me as. I wanted to be the person with no problems especially in light of always having problems every day. And but you know what's weird at the same time is I wanted to pee I wanted people to see that I was screaming inside and I was freaking out. And I wanted that but at the same time I it it was a weird back and forth thing. But then actually what came to pass and I think that's another new turn in my life is that I wanted people to look at me just as much as me looking at myself as not the person that's okay. It's a person who is now okay. It's a person that knows how to get through stuff now. It's a person that went through hell and found his way back. That's what I want people to know about me now. Not that there's never a problem. I want them to know that my life is problematic but I've earned the abilities and the techniques and the strategies to work through them and do not run anymore.

SPEAKER_03 32:58

I I agree I want people to I mean I've I've gone from being invisible or making myself invisible and and I'm not saying this for everybody so don't take this the wrong way like if you don't use a cane or a dog that you're trying to make yourself invisible for me that's what I was doing. Yeah um everybody isn't like that everybody has their own reason for to use or not use a cane or a dog but I did not want anyone to see that part of me and now I've gone to making myself completely visible and I am okay with all of the mistakes that I that I make the things that I can't do. And I I like you I like for them to see she has issues but she can work through them. It doesn't always look perfect and it takes a lot of time for me at times but I like for them to see me coming through the other side and finding a way to be okay.

SPEAKER_01 33:59

And I think so I you said something I think that's an important reason why I like it like the way you talk about yourself right you'd whether it be internally or externally the way you talk about yourself and I like talking about myself as a person that got like I like telling that story for that to be my hero story is I I went through this. And then when people see it too I get asked all the time like dude how are you who you are when I watched you I wouldn't I you know we walk in somewhere and I couldn't imagine what it feels like to be you that dude right like I figured it out though you know I'm so proud of it. But that's another thing that you said though is you know the negative word addiction and whatnot. And I became really really good at putting myself down and that's it's such a clean it's such a cliche is to stop you know it's the same thing with um weight loss and whatnot where you look in the mirror like oh you fatty like you know it's really it's really easy to say that and I you know I talk to myself in much more language than that and that's not good sometimes right but I have learned to stop doing that and I will stop my when you start to learn how to catch it I will catch myself mid-thought and even if it comes out first I'll go nope that's not true you're going to lose that weight nope you're going to get bigger you know or like you know stronger not not unless you know eats is on the menu that night but you know whatever maybe you want to be a sumo wrestler wrestler yeah you're gonna get fatter bud let's go go for it it it is always that and now I found like and this is new a new thing that I have found and it's it's very awesome to me is when you know people ask hey how's your life and it's a simple oh yeah work you know the same old thing and now I don't answer that like that anymore even though that's a social norm I don't do that anymore I am stoked to talk about my life to say oh I'm doing this I'm doing that and doing that more and more it and I had to actually stop myself at one point and think am I bragging about my life and no and first of all like what is there to brag about dude this is not a braggable life but you know it is it that and there's a difference of being proud of yourself and talking about things that are actually relevant. This is you know you could say I don't do anything I just work and I go home whatever. Cool I work too here's what I do I'm doing a podcast man and it's like son of man I'm doing this thing with charity and you know and I I love doing now that I started doing that that has greatly influenced a more powerful more resilient and more positive mindset because I'm actually verbalizing what I'm doing and I'm letting people know I'm proud and in turn it's I'm getting pride back from it. You know?

SPEAKER_03 36:45

Yes you're hearing it for yourself. Yeah like you're you're talking to yourself when you're talking to other people you're talking to yourself about how positive your life is and what you're contributing.

unknown 36:55

Yeah.

SPEAKER_03 36:55

Yep and it kind of solidifies that mindset you know a lot so we one thing that you and I had talked about before we even um started today is the cycle of isolation and loneliness and pulling away and getting more isolated because you you pull away um for me that cycle existed and now I have found that if I break that cycle and surround I have surrounded myself with people I probably have more friends both sighted and visually impaired than I had when I was fully sighted. And I mean like deep deep friends like deep friendships where I can I can rely on them I can turn to them they understand and what what does that look like for you um because that's what brought me out of to where I am today is is breaking that cycle.

SPEAKER_01 38:05

Yeah I mean breaking the cycle is pretty much everything that you know I'd spoken on before it's just I had to and I I don't know I had to stop lying to myself in some way which I truly hate that term lying to yourself. It's it's it I how do you lie to your it doesn't make sense to me but you know you're lying you know you're lying man like I don't get it yeah yeah uh I don't know but I it it's just breaking the cycle I think more than anything you know outside of the things I've already said breaking the cycle had to be something I committed to you can't say you want to break the cycle you can't say you don't want it to be like this anymore you can't say you're going to do something without committing to it and I had to commit to you know it it it almost became addicting to feel terrible all the time because it was comfortable it was normal it it was where I was safe ironically the most unsafe is when I was you know stuck in these loops and whatnot and it was you know if I if I'm sitting there at night even if I'm you know drinking my life away or something with friends and talking about all these things that we're gonna do and that I'm gonna do and how my life's gonna change and you know trying to say I'm getting better. No you're not look at what you're doing. No you're you're doing the same thing again. And once I committed to that and realizing that my tomorrow is so much more important than being upset all night. My next day is important my next week is important that I want to become something so much better in our community in myself I want to look I want to actually enjoy looking at the mirror I want to put more mirrors up in my house. You know I won't be able to see them soon but that's cool. It's I I still know they're there you know they're there. So I that and that and also like the family aspect too is I want my family to be proud of me because this this was hard especially with me and my age it was very hard because I you want your family to be proud and whatnot. And I don't feel like I definitely haven't led a proud life. I know they have pride in me for what I've come through and how I've got through got through it not maybe not how but that fact that I got through it that I fought tooth and nail to get through it. But I still don't feel like I'm upholding the life that I should be and that's something else that motivates me to you know get get it done man like it in and to also realize the almost the childhood wonder of anything is possible. It's we're not stuck in some jail and frozen in this like hellhole or whatever we we can get out and do such amazing things if you just stop thinking about the past and what you used to be or what you could have or comparing yourself to everyone else. It's let them compare themselves to you. Let them look at wow I'm sitting around why this blind guy just ran into a door frame yet is actually talking about this whole massive empire he's building be that person where they want to go how do you do it yeah you know that's yeah that's uh that's a big thing so let's move on to what it when you went when you started going through this what is something that you wish you could go back and like tell yourself like what would you tell that person before or like as it was happening as you were understanding that this was happening and what was coming in your life in your future I wish I would have oh because five years is a long time to waste um and I wasted it I wish I would have stopped talking about myself the way I did.

SPEAKER_03 41:50

I wish I would have put myself out there and not been afraid of a response. Um I think today I put myself out there 10 times and seven times I may get no response or a negative response but seven times I get you know someone coming alongside of me and doing something with me. When I reached out into the visually impaired community and asked for someone to be alongside of me on the podcast first of all I would have never expected you no I just wouldn't have we are we are so different and but I'm so glad because we are so different and and it it it's good and I have a new friend and but you know you were I could look at that as a failure because you were the only one who answered yeah and and but it's that's all it took is it took that one person to answer and yeah and that I I don't know what I would tell myself. I guess I would tell myself to be brave put myself out there more and just because I can't do what I'm I was doing doesn't mean that I can't contribute anything because I feel like today I'm contributing more to society to our community and to life in general including my family way more than I did when I had a 40 hour job and was making money in corporate America I am more fulfilled today than I was then I wouldn't I I would I at that time you couldn't have convinced me that that was the case that it was going to be that way today for sure but it is yeah yeah absolutely what about you from the same the from the same angle what would you have looking back what do you wish you would have I mean if if I I there is so much I would say to that person and it it's knowing what's coming but I I would also I mean something important I think I would tell myself is to

SPEAKER_01 44:00

One, it's not gonna be easy, you know, except that it's not gonna be easy. And I am someone that likes to talk in black and white in no gray area.

SPEAKER_03 44:08

And you know, that's why we get along so good. I'm black and white as well.

SPEAKER_01 44:14

Uh not not because you're colorblindness, though, right?

SPEAKER_03 44:17

And it partially it might be because of that, actually.

SPEAKER_01 44:21

Uh so you know, I I would tell myself it's gonna get hard and to let those feelings in, to embrace those feelings, to let them in and to understand them, to work to understand them, don't work to fight them, understand them because I would have not taken back any of the hardships in my life, not a single one of them, no matter it's vision or anything else. I do wish some of them didn't take as long, you know. That wasn't okay. But I agree, I I I am thankful for every bad day I've had, and the only reason I'm thankful for is because I've gotten the tools to get through them more and more and to go through the bad situations, and it think it's a really important thing in life. But I would tell myself to to have that idea in mind, but to also understand that your life isn't over, like literally buckle up, bud. This is about to be a roller coaster of emotions, of life, of fun, of excitement. And I still think my life is fun and exciting. It's it's quirky and weird. You know, the the other day I uh I was in my garage, I was putting my shoes on to go for a walk, and I bent over and to like put my shoes on, and I hit my forehead. I I hit the same place all the time, and immediately I could feel the blood running down. I didn't see what was sitting in front of me, and I mean it was immediate. And I just I sat there feeling it go down my face, like, really no. I'm imagining it. I know it's I know it's blood running down, and I go and go into the bathroom and just start laughing at myself, like look at you. What did you do again, man? Are you kidding me? You know, so to enjoy the little moments, to remember that it life's not out to get you, and it's not that bad, and things are going to happen. You need to accept that you will fall down a flight of stairs or seven, you will do that, you will, you know, don't ever get a pedicure because those nails are shredded. The coffee tables eat those things alive. Yeah, you know, so it it that's what I would tell myself is to embrace the hard times, to learn from the hard times, and to look forward to the truly unknown world. We were all kids once, and that's what made our life so exciting. We didn't know what was coming. And at some point in our lives, you grow up, and the control factor becomes such an insane thing that we become so comfortable living in a world because we think we control what's gonna happen, what the outcome is, but that wasn't what made us so happy and excited as kids. We were excited for the unknown. Anything was possible, and it still is. So those are probably the things that I would tell myself.

SPEAKER_03 47:17

Today the unknown is a little bit more scary.

SPEAKER_01 47:20

Um, you know, it's unseen too.

SPEAKER_03 47:23

Yeah, it's unseen. It's it's it's scary not knowing what your life is gonna look like in two weeks or two years or whatever it might be. And everybody's vision journey is is obviously different. But the one thing I've had to tell myself, and I I actually tell it to other people because they say, like, oh, you know, I'm so sorry for your vision loss or what you're going through. And not to discount it because it is obviously it's very significant, it impacts every aspect of our life. But and I also don't like to do the thing where I say I need to be thankful because I'm I I'm dealing with this this and not this.

SPEAKER_02 48:08

Yeah.

SPEAKER_03 48:08

But I'm not dying. Like I am not, I have a life ahead of me. It looks a lot different than what I anticipated when I graduated high school and went off to college. And but it is a life and I can make the best of it. And yeah, I it it could be worse. Like I said, I don't like to do that comparison, but it could be worse. And I'm thankful for where I am and where I'm at.

SPEAKER_01 48:36

Yeah, I I I don't like that either. The the whole comparison thing, life could be worse. I think that's such uh it's so arbitrary. It's it's so it's based on exactly what you're going through. You know, it it just it's not, it doesn't work for me. I I agree.

SPEAKER_03 48:50

Um in the vision lost community, yeah, yeah. Like I have less vision than you, I have more vision than you, I it's just different, and it's where we're at. I'm sorry, I I you were talking.

SPEAKER_01 49:04

No, that's that's exactly, and you know something I actually learned in a way to communicate with my ex better because I was just not seeing things from her side very well, and the way I started looking at it is when you look at someone that's going through something, and you don't have to understand because let's let's be honest, there are some things that are way worse than other things, and but that doesn't change the emotional impact or weight that it is having on the person experiencing that, right? So I had to understand that to where and I made it very simple, you know. I said talking to her, I'm not gonna name her, but I was talking to her and and said, listen, you know something I need to understand is that if you don't like the color blue and it upsets you and it angers you, then if I care about you, then I need to respect that. And if that means that I'm not wearing blue shirts or whatever it may be, then that's okay. If I care about you, then that's what I that's what I need to understand. It's not about that I could make it laughable that why are you why do you not like blue? It's just a color, it's actually my favorite color. But the fact is that's not what matters. Some reason it's impacting her in that way, and I have to respect that and embrace that that's an issue for her. And I'm and I that that kind of changed the way I looked at everyone's things going on, that the whole comparison thing. It's you know, especially with us, you know, there's people everyone's at a different level at the and on their vision loss journey, right? It's and it's all very personal. But when someone's talking about one thing, you know, they're at 35 degrees of vision and they're having a hard time, like objectively, I can see that for sure. I mean, we were there. However, just wait, bud. But then at the same time, it's I respect the fact, you know, I still want to comment and say, I completely understand, you know, it's it's really hard to deal with and this and that, and not not say, Oh, you'll understand one day, or lucky you, or you know, it's just not the way to approach it.

SPEAKER_03 51:05

And I I look at even the difference between me and you, I have um significantly uh significant amount less vision than you, and but you're also 15 it more. Hey, you're just a teeny bit younger than me. Like not much, but you're a little bit younger than me.

SPEAKER_01 51:25

For the record, she's 37.

SPEAKER_03 51:27

I'm 37. I'm forever. Oops, I'm for just kissed my microphone. I'm forever like 29. That's what I tell my kids. I'm forever 29. So I'm actually younger than you, just like obviously.

SPEAKER_01 51:38

But if I'm 15 years younger, then I'm definitely in high school. So I love that for me. I love that for me. That's right.

SPEAKER_03 51:46

But you you you can't look at I can't look at you and be jealous of what you have because 20 years ago I was there, and I may have even been in a better place than you are. So, and everybody's got their own journey, and my life is different than yours. And so that's just one little thing. Your degrees of vision is one little thing in a whole grand scheme of things, and it's just not even worth comparing.

SPEAKER_01 52:12

No, no, it's not, and really anything. It's I I I respect people in their journeys, and that's and that's all. And I I want to touch on something you said earlier, too, is you said that um, you know, you're still kind of like nervous about your life moving forward, what it's gonna look like in uh two weeks or whatever. Uh I think something important note on that is, and it's something I am training myself to think about all the time is to just not be worried about the future because I can't stop it.

SPEAKER_02 52:44

Right.

SPEAKER_01 52:44

You know, control your controllables, and that's all. If I can get my mind under control, then I'm unstoppable. No matter what happens to me, I will be fine because I'm I'm I'm prepared to endure it. You know, it doesn't mean that physically, the physical world isn't gonna get a little bit sketchier and a little scarier and things like that, but life can still, even the unknown is can be okay if you just get yourself prepared for those moments. And it's it's not that it's easy because, like we talked about, experience is everything going through it is what you learned about. But I just that's what I continue to tell myself is stop worrying about something I can't control and to focus on what I can do right now to change tomorrow. And there's actually um Kobe Bryant, uh, he said something with another podcaster, and he said uh it was Jay Shetty he was talking to, and he said to stop try to stop looking at that I'm not, you know, I'm not I'm never gonna be a champion, or one or to one day I will be a champion, instead say, you know, wake up and focus on tomorrow, or I'm better than I was yesterday. I just butchered that, but that's that's what that is. That you make sure you move the needle every day. What can I do today? Today, and don't look at the entire end goal, the tire, the the fear itself, the biggest thing. What can you do right now that will that will make me a step further, even if it's just one step further tomorrow? Yeah, and that is how I operate now.

SPEAKER_03 54:12

And yeah, that is it's very interesting that you say that because it's almost it's something that I do almost every day. Uh when I get up, I think, what can I do today to propel myself forward in whatever I want to do? And it might be something very small.

SPEAKER_02 54:30

Yeah.

SPEAKER_03 54:30

Um, can I send an email? Can I reach out to my community? Can I go to coffee with somebody? It is simple as that. And it is, it's all about today. I do think about tomorrow and in what is to come, but I don't live there. I I I try to figure out what I can do to prepare for tomorrow because I know what's eventually coming. Um, maybe I don't know to what degree, but it it we do have a progressive condition, a degenerative condition. So we know that change is coming. And I guess I look to what I can do today to prepare myself, to make myself better for tomorrow. And that mindset is is really what keeps me at my 8.5, I guess.

SPEAKER_01 55:17

Yeah, that's right. 8.5.

SPEAKER_03 55:20

8.5.

SPEAKER_01 55:21

That's right. I mean, it's a 0.5 better than mine. I don't know why you gotta show me up on happiness, but that's okay.

SPEAKER_03 55:26

Hey, I'm competitive.

SPEAKER_01 55:30

But we are about out of time. So I wanted to one wrap this up, and I needed to make it clear to some people here that charity and I we have retinitis pigmentosa. This is not a specific RP retinitis pigmentosa podcast. This is not just that. Now, when we talk about our experiences, you know, we're gonna relate it to the things that we know. However, we will be bringing on people from different worlds, different aspects. We'll be taking your guys' questions and talking about them here, researching them, doing things like that. So I just want to make that very clear. I also want to speak directly to the people that do have red nitrous pigmentosa and more specifically, the ones that have been more recently diagnosed. I have created a guide that I made that is spoken in a way that is like a friend who is talking to you. It is absolutely free, doesn't require anything, you don't have to give me an email. I don't care. It is for you because I know what it's like. She knows what it's like. When you walk into these offices, these doctors' offices, they give you all this ridiculous medical jargon. And all as you know is you might be going blind if you understood correctly. And it really tosses your world up and throws you through a loop. So I created this guide that can help you understand what's going on. And there's a big section on it, too, that's for friends and family. So people know how to support you by walking with you and not in front of you. And it's a really big one that people have really enjoyed. So I will drop the link below for anyone that wants to check that out. I like keeping on my coffee table and whatnot. And then friends can, in their own time, kind of get an idea of what's going on with me. And it's fun to send to people, and then you don't have to do all the talking if you don't want to to tell everyone what's going on because it can be hard. Um, also, moving on from that. This, I don't think that we planned on this being such a big, I mean, it's obviously the big topic, but there is we hardly scrape the surface of I think what we actually wanted to talk about today.

SPEAKER_02 57:17

Yeah.

SPEAKER_01 57:18

So there is a ton of stuff, and we will be approaching these in a much a lot of different ways. But for everyone going through something hard, there are bad days and there are good days. I promise you, there is another day tomorrow, and you can get through it. We are walking proof of it, talking proof of it at least. We might not walk that well. But you can get through it, and the hard days are not the end of the world to talk to someone, and I don't mean you have to go and talk to a therapist. If you want to, go ahead. There is nothing to be ashamed about when you go and do that. Just like Charity said, she has been to a therapist herself. I have tons of friends who go to therapy, it is not a big deal. Or talk to a friend. I promise talking about what you're going through, just vocalizing and voicing it. Even if you say it out loud in your house alone, it helps to give it the space it needs to breathe. So you are not alone. And wrapping it up, thank you for stopping by for another episode of Central Vision Podcast.