Living with Cone Dystrophy: Hannah's Therapeutic Humor
Episode 29
In this episode of the Pediatric Retinal Research Foundation podcast, Hannah, a content creator, discusses her journey with vision loss and how she has utilized social media as a therapeutic outlet. Hannah began creating videos on TikTok and YouTube in 2023 to cope with her vision loss, which started around three years prior. With the tool of humor, she transformed the challenges of her condition into clever videos, receiving laughs and positive feedback from friends and family. This creative process helped Hannah manage her difficulties while making others laugh, serving as her personal therapy. Despite her initial reluctance to acknowledge her vision impairment, Hannah found solace in the supportive community that her videos fostered, and she continues to share her experiences candidly and humorously.
Hannah also delves into her background, explaining that she was born with cone dystrophy, a rare genetic retinal disease that gradually worsened her vision. Initially, she maintained a near-normal life, working as a professional photographer for 13 years. However, in 2019-2020, her condition rapidly deteriorated, leaving her with only a pinhole of vision in one eye. This transition was tough, especially during the pandemic, but her family and friends provided crucial support. Hannah shares that joining online communities and connecting with others who have similar experiences was invaluable. She stresses the importance of communication and patience, advising those newly experiencing vision loss to seek support and be open about their needs.
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Luisa Recchia (00:02):
Well, welcome everyone to another captivating episode of Through Our Eyes Podcast, brought to you by the Pediatric Retinal Research Foundation. I'm your host, Luisa Recchia, and I'm joined by my favorite colleague and co-host Breyanna Willitt. In each episode, we explore the inspiring stories and innovative breakthroughs in the unwavering spirit of individuals and families who face the challenges of retinal diseases head on. We'll dive into the world of research, cutting edge technologies and the compassionate hearts of the people who make it all possible. But before we embark on today's compelling adventure, let's take a moment to thank our incredible sponsors at the Pediatric Retinal Research Foundation. They are the driving force behind our mission to spread awareness, foster hope, and shed light on the invaluable work happening in the field of pediatric retinal research. Together we strive to make a brighter, clearer future for children and families affected by retinal diseases. Hannah, thank you for joining us at the Pediatric Retinal Research Foundation podcast. Why don't you go ahead and tell us a little bit about yourself?
Hannah (01:07):
Hi, I am Hannah. I am a content creator. I guess that's what we're called nowadays. That's only been in the past year. I started making TikToks and like you, I think I started with YouTube. I started making YouTube videos about a year ago, and I was kind of just using it as my own therapy for my own vision loss journey. I started losing my vision about three years ago and I then decided to start making videos. Just I have a dark sense of humor sometimes. So I think that I just started taking every single like, difficult issue of going blind and I turned it into a joke. And so I started making videos about it and I got really good feedback from my friends and family and it helped everyone kind of understand how the issues that I was going through, but also it made them laugh.
Hannah (01:58):
And that's kind of like my personality is that I need to just make people laugh. It's just in me to make people laugh and, and it's how I deal with my, my own problems and stuff like that is that I have to laugh about it. I think you just kind of have to, so I've been doing that for about a year and I've gotten a lot of good feedback from it. So that's kind of why I've continued it and I've used it as my own therapy and I, you know, I, I have fun with it, so I kind of just do it for my own benefit. So if anybody likes it, then I'm really thrilled that anyone likes it. But I really just kind of started it as my own, you know, therapy kind of thing, so, yeah. Yeah,
Breyanna Willitt (02:36):
No, I completely get that. 'cause I am, I'm the same way, you know, I like to make, you know, the blind jokes and all the other stuff, you know, anybody I'm hanging out with, I'm like being prepared because there will be blind jokes. <laugh>
Hannah (02:48):
I, at some point will make you uncomfortable. I, I like, I kind of thrive on it sometimes, like, 'cause I feel like people are kind of uncomfortable around me sometimes anyway. And so I'm like, if I can make a joke about it, and make you a little bit more uncomfortable, but then also make you laugh, then it, I think it's like an icebreaker, you know, in the grand scheme because I'm like, people get uncomfortable about around disabled people in general. So yeah, like if I can make you laugh at some point, then I feel like score, or you know, I win.
Breyanna Willitt (03:14):
Yeah, exactly. I feel the same way. So, I guess, so what, so I guess tell us a little bit about how your vision loss occurred and just kind of what that's been like. 'Cause you lost your vision more recently.
Hannah (03:27):
Yes. Well, I, I was born with, it's called Cone Dystrophy, also known as CRD Cone Rod Dystrophy. My, my issue is specifically Cone Dystrophy, and so I was born with that. So I've never had perfect vision. I don't know what 20/20 is like, but I was like right past the cusp of legally blind. And I, I, in my mind, I knew that I was visually impaired. I obviously, I couldn't drive or anything like that, but I think that I managed pretty well. I, I was kind of always in denial about it. I think I fit in with sighted people and most people didn't even know I was visually impaired and I always hated to have to even mention it kind of thing. But, you know, and I, I went into art, I in college and I was a professional photographer for 13 years. I had my own business for 13 years, and then come like 2019, 2020, I started losing my vision.
Hannah (04:21):
It started coming in like blind spots or whatever. And I did not know that this was gonna be a thing with my, with my eye condition. I thought that I was gonna have the same vision. I had the same prescription since I was four years old and I was diagnosed at 10. And so I, my prescription has always been the same. So I thought that that would be the way it was gonna be till I was, you know, old like in, you know, my sixties, seventies or something. I thought that that would be when my vision starts going, well then come, I'm only like 33, 34 and my vision starts going and I, and it started in my right eye and I was really confused by that. And it's such a rare eye condition that no one knew what was going on. I started joining some Facebook groups with other people that had CRD and they were saying the same thing.
Hannah (05:12):
And again, this is a very rare retinal disorder that no one knows a lot about it. And other people were having the same issue of that. They started, they actually, some people had 20/20 vision and then started losing their vision later in life. So I was like, oh, wow, this, this is a thing. You know, I, I didn't even realize that, that that would be something that would happen to me. So that's just happened over the past three years that I started losing my vision and it turned into like, blind spots. I had blind spots all over the place. And then just slowly it's kind of gone. And now at this point from say 2020 to right now, I have about a pinhole of vision in my left eye. And then, yeah. And I didn't, I had no idea that that was gonna happen.
Breyanna Willitt (05:57):
Yeah, it was, that's crazy. I relate to you a lot just in, you know, my own personal vision journey. You know, I have, it's called FEVR and you know, I had, you know, I was able to drive and everything up until the point I was 21ish and I'm, I'm 28 now. So, you know, it's been over the last couple years that I've really taken, you know, toll on my vision. I guess <laugh>
Hannah (06:21):
I honestly like, I, in, in the groups that I'm in, the, the Facebook groups I'm in, I feel so bad for people that have gone from 20/20 to this. Like, I can't imagine how hard that is. Like, it's been hard for me for the past three years, but like, I didn't go from 20/20, uh, to this and I could never drive. So I mean, that was, you know, issues I had to deal with when I was a teenager, being depressed, right? So I feel so bad for people that have to go from say perfect vision to this. I can't imagine that kind of transition. It's already been hard enough for me to go through this transition. So
Breyanna Willitt (06:53):
Yeah, that, so I guess, 'cause I don't really know a lot about your disease, so if you could give us just like a brief kind of, you know, dumbed down version of kinda what the process is that caused your vision loss. So if you know <laugh>
Hannah (07:07):
So yeah, I mean this is, you know, it's a genetic retina disease and I basically was missing, so in your retina there's rods and cones and it's like little receptors to your brain that, that interpret light or whatever. And so I was born with 80% of my cones missing. So they just weren't there from birth, at least what they said anyway. And they actually were shocked that I had color perception because that, you know, a lot of that is color perception. So they would've assumed that I'd be colorblind, but I actually wasn't colorblind. I'm colorblind now, but, so I don't really know what the deterioration looks like now. I would probably have to go in and have another one of those terrible ERG tests that were traumatizing for anyone that has been diagnosed with a retina disease that had to go through an ERG test. I'm so sorry. And if you're still dealing with trauma, I'm sorry,
Hannah (08:03):
Still dealing with trauma for that, that test, that test was terrible and I had to do it when I was 10 and it was, yeah, I still have nightmares, but it was terrible. Oh geez. Oh my gosh. It was horrible. But it's the only way to diagnose this kind of retina, retina disorder and you know, these tiny little receptors in your retina, which is such a tiny little portion of your eye, but it's like everything that has to go through your eye to your brain of the, the receptors that have to send to your brain. It's all these tiny little things. And that's why there's, there's no cure for it. There's nothing they can do for it. 'Cause it's such a tiny little part of, part of your eye. I, that's the only thing that I've, I've understood of it is that basically it's just these tiny little receptors to your brain and that they're so cure for it because it's so tiny and minuscule and you have to get this really extensive, horrible test just to even diagnose it.
Breyanna Willitt (08:58):
Right? Yeah, that's, I I've never had one of those luckily, from the the sound of it.
Hannah (09:05):
Yeah. Well, I don't know anything about your eye disorder too, like, I didn't know 'cause I think that this test only it focuses on like the back of your eye kind of thing because yeah, like retina specialists and stuff, they can't see the back of your eye so they can't see. And these like little receptors are like the electrical impulses, you know, to your brain or whatever. And the only way to diagnose it is through this horrible, I mean, I don't know if you want me to go into this test 'cause it's horrible. They go, uh, they put, they put these like contacts in your eye, they're like little electrodes and they open your eyes so you can't blink. So you're forced, your eyes are forced open. Then you go into this like dome like shape and you know, if you're thinking of any like clockwork orange imagery, Yes, you're right.
Hannah (09:51):
It's horrible. So you go into this like, dome like shape, they kind of strap your head in so you can't move and they strobe lights at, at your eyes and you can't blink in. vary, varying degrees of patterns. And, and I don't even know how long it lasted 'cause I was only 10, but oh my god, it was, it was horrible. It was horrible. And when it was done I was like crying. And then the lady, the technician lady, she was like, don't feel bad. Grown adults cry. And I'm like, yeah, because this is horrible.
Breyanna Willitt (10:21):
Yeah. I've never had one and I really don't ever want one. I will never, I'm
Hannah (10:26):
So happy for you.
Breyanna Willitt (10:28):
<laugh>. I will never ever complain about getting, you know, scans done or anything like that because I just have to put my chin on the chin rest. That's all I have to do. Yeah, right.
Hannah (10:37):
Like all of their eye appointments just are, are not that bad after you go through that
Breyanna Willitt (10:41):
It's just, yeah. Thankfully. So moving onto kind of, you know, more of your current vision. So were, when you were losing your vision, were there any things that really helped you in your transition between, you know, the vision that you had and the current vision that you have as far as, you know, technology or even people or really anything?
Hannah (11:04):
Yeah, I don't think I could have done any, anything that I've done without my family and friends and stuff. And I, you know, I have, my family lives close to me, but I also, like, I'm married and I have four kids and they, all of them helped me so much. And this was, it was a very hard transition and all of it happened around the pandemic, which was weird. I didn't even acknowledge how much vision I was losing because I was at home. And I think that was, that was hard to acknowledge that when I realized how how much vision I had lost wasn't really even until like 2021. And that was when we started like venturing out into the world again. And I then realized, I was like, oh my God, I can't, I can't see, I can't see so much. And I started losing my vision in like, peripheral so that I could still see center, center vision, but I couldn't see anything else around me.
Hannah (12:00):
And you know, your brain does a really great thing where it like makes up everything you can't see. Oh yeah. And so sometimes like your brain has to then acknowledge what you can't see. And uh, it was at some point, I forget when it was exactly, but like someone had turned the light on over to my left side and I didn't know that happened. And then I was like, well, somebody should turn a light on. And then they're like, the light is on right next to you. And I was like, what? And I realized that I had completely, it was black, it was completely black on my left side. And I was like, oh my gosh, I did not realize that I, that I have no vision over here. There's nothing there. It literally was black. It was nothing. Wow. Also, I didn't know I was gonna lose vision in that kind of way too. That was a whole other learning process of, as my vision went, it's like, it was mostly, it was mostly dark. It was mostly like nothing. Wow.
Hannah (13:00):
Very weird and scary transition yeah, to go through. And I don't think I could have done anything without my, my friends and family because they really helped me through all of that. And, you know, and after 2020, I went through probably about two years of, you know, deep depression. That was, it was hard. It was hard to acknowledge it and to go through it and to, you know, the grief of it, all of it, Mm-Hmm, was, was difficult to go through. And really at the end of 2022, that was when I was like, I need to pull myself out of this. I need to, this is, this is reality. You need to accept it and move forward. And I had finally started using a cane, which was another transition to start using a white cane. And then I was like, you know, I need, I need to just, I need to just embrace this accept this is the way it is. And that was, you know, kind of when I started doing the videos was the beginning of 2023. Yeah.
Breyanna Willitt (13:55):
I feel like it's always hard. Yeah. Kinda adjusting and coming to terms with this is, okay, this is how I live now and it is what it is and what can I do to, you know, get by.
Hannah (14:08):
Right. All of it is a grieving process and you have to go through the grieving process and that sucks and it's not gonna stop. It is like, you know, you are, you're always gonna go through that grieving process. Uh, 'cause I still do to this day. Like every, every, you know, every now and then, like something will just like punch you in the gut and be like, God, I wish I could see that. You know? Yeah. But yeah, I, once I, I finally accepted like, this is it, you still have a lot more life to live. You are still young. You're, you know, you need to accept this and move on. And then I was trying to just like find whatever joy I could find in anything. And that's, you know, when I started making the videos, I was like, this is, this is something that's gonna entertain me. Basically, I was entertaining myself is when I started doing it <laugh>.
Breyanna Willitt (14:52):
Yeah, definitely. Do you think that, you know, your videos and stuff kind of helped you kind of cope, you know, with, you know, what you were going through and everything? Do you think that?
Hannah (15:01):
Completely Yeah, completely. And, you know, during this process, my, my mom passed away as well, so it was like a double grief that I was going through. At this time. She was a therapist and so like, after she had passed, and that was at, you know, in September of 2022. And I was like, I think that kind of helped me, propel me into doing this as well. She's like, I was thinking like, you know, what would she tell you to do, like as a therapist? What, what would she say? She'd be like, you need to talk it out. You need to say all the things. Say every single thing that's bothering you. Say, you know, whatever you need to say, say it out loud. And so that kind of helped me start the videos as well of that. Like, I'm just kind of talking to a camera and I'm saying what I need to say, but also my personality is making everything into a joke because that's what I do. <laugh>.
Hannah (15:51):
That's maybe my coping mechanism. So I'm like, well, okay, this is something I could like sit here and talk into a camera about. But I'm like, no, no, I'm not gonna do that. I'm gonna make a joke about it <laugh>. So Oh, yeah. Yeah. Another way that I started the videos of just joking about everything. And I think that it's, it's easier also for people to relate to and you know, you get, you get the sympathy from people all the time and you know, that's always appreciated. But after a while it's like, yeah, I know. Okay. I don't want everyone to feel bad for me constantly. So, and especially people that like knew you as a sighted person, and then now like, oh, I'm blind now, you know, or I'm losing my vision now. I don't want people to sit there and feel bad for me constantly. So I think I also use the, the videos as, as that kind of thing.
Breyanna Willitt (16:39):
Yeah, definitely. I think the community just that has also developed, especially over the last like year, probably just the amount of people who are, you know, blind, originally impaired and are online making videos and everything. I, I could not have imagined this, you know, five, 10 years ago.
Hannah (16:59):
I can't even, no, I couldn't even have possibly imagined that. And even, even just like you said in the past three years, really. 'cause when I started losing vision, I was like looking up videos and there's certain people that like I follow now that I started following in 2019, 2020. But there's so many more people now, which is wonderful. I, I found such a awesome blind community on social media that I never knew existed. And I honestly never even tried to because I think I was in such denial that I was even visually impaired and I just wanted to be a part of the sighted world. I kind of wish that I would have looked up stuff, you know, earlier on, but it wasn't until I was really losing more vision, then I started looking up all at Facebook groups and so many people that understand what you're going through. And that's, you know, and that's the thing that I have, I have gotten from feedback from my videos is the, you're not alone. And other people saying like, your videos are making me feel not alone. And I'm like, that's amazing that anyone would even say that. And honestly, anyone even saying that to me makes me feel less alone.
Breyanna Willitt (18:14):
Right. Yeah. Do you remember who, you know, your first video that you had watched by someone who was blind was?
Hannah (18:21):
What is her name? Molly? Yeah,
Breyanna Willitt (18:24):
Same here. Molly Brown.
Hannah (18:25):
Okay. Yeah. I feel like she is like the queen of blind people. She like started it all. I feel like,
Breyanna Willitt (18:30):
Oh yeah, I love her.
Hannah (18:32):
I still follow her. Yeah.
Breyanna Willitt (18:34):
I, yeah. So I was scrolling when we were prepping for the interview and everything, you know, I was stalking, you know, your TikTok page and everything, and some of your videos, like, especially your song videos. Like take me through how that like comes into your brain, how you kind of write your lyrics and everything. <laugh>. I
Hannah (18:55):
Literally, when I read that question, I was like, I don't even know. I'm like, no, I, I, I think that I've always had this weird brain where like sometimes I didn't know lyrics to things and I'd like make up my own lyrics to songs. And I've always loved music. I've always like tried to play an instrument. I play piano a little bit. Not great. I've tried to play guitar, like I've always loved music and I love singing even though I don't have a good singing voice, but I just like singing. I don't even do karaoke. I'm still even too scared to do that. But I was like kind of using all of these things that I like to do and, and then just started like thinking of things related to blindness. And, and normally I don't prepare a lot for videos, but with the song ones I do, I probably think about them for at least a week beforehand.
Hannah (19:41):
Oh wow. Because I'm trying to like, figure out the lyrics and how they're gonna work and then I'll try singing it and if it like it doesn't flow, then I'm like, okay, we need to change that lyric. And then having to piece that together with the music is hard. 'cause I usually record it where I'm listening to the, the karaoke version, like in my ear. Like an earpiece. Yeah. And I'll have my hair down or something so you can't see it. And then I'll be singing it while I'm listening to the music because yeah, I'm not, I'm not good enough of a, a singer or, or keeping in tune with anything that I have to listen to the music in my ear just to do it. And yeah. That, that'll take a little bit more prep time. But I also really love song or music comedy. Love it, love it, love it. I would say, if you want to categorize my humor, it would be The Office and the show Crazy Ex-Girlfriend, which is a bunch of poor humor. Like if you put those two shows together, like it encompasses all of my humor, basically. I love musical humor.
Breyanna Willitt (20:45):
Just even like the one I, the one that keeps playing in my head is like the Dolly Parton one. <laugh>.
Hannah (20:51):
Yeah. Just so everything, I think last year and I just recently reposted it 'cause I was like, I don't think anyone saw this when I posted
Breyanna Willitt (20:58):
It last year. Right. Even just like, you know, the video and everything. Do you record that all yourself as well? Well,
Hannah (21:05):
That one actually was like, I had already done several videos and so a lot of that footage was literally other videos I had done and I was kind of piecing together other videos. I think I only created like a couple of new ones for that one. But I want, because that song is such a fast-paced song, I wanted like a lot of clips of a lot of different things to kind of feel in the, the beat with the music or whatever. Right. But yeah, most of it actually was clips from videos I had already made before this.
Breyanna Willitt (21:34):
It's, it's perfect. Like all of 'em, especially Thank you. Like your, even your skits and like your little short things. Oh my God, they're so funny. And they're so relatable as well, you know, to, I feel like
Hannah (21:46):
Everyone's pretty much Thank you. That's been like the best compliments that I've gotten. And from other blind people just saying like, I think at the beginning I was thinking I was, you know, trying to give information to sighted people of like, hey, this is, you know, this is something that, you know, I'm dealing with or I'm going through, or whatever. But then over time I realized when, when people started kind of acknowledging the videos, it was blind people that were acknowledging the videos. Mm-Hmm. And they were like, oh my gosh, this is so relatable. And now I feel like most of my following on TikTok is blind people. And they're like, this is exactly what I've been talking about. And you just put it into a different, you know, or you put it into different terms or a different way of saying it. And I was like, that, oh, that means so much to me.
Hannah (22:26):
I, I didn't even like think about that. 'cause I, you know, again, I didn't know that there were so many blind people on TikTok. I didn't know there were so many blind people on any social media. And I'm thrilled to know that there's so many people that, you know, can relate to anything like that. And they really appreciate the, you know, the finding stuff funny. 'cause it's funny. Absolutely. You know, there's so much humor about, about life in general and, and even going through any kind of disability. I think you can find humor in anything.
Breyanna Willitt (22:55):
Oh yeah, absolutely. We're taking over, you know, blind people are taking over. So what advice would you have to someone who, 'cause I recently went through this myself, you know, I recently took over, you know, creating the videos and everything for the podcast and then my own TikTok page as well. You know, what advice would you have for someone who was hesitant, I guess you could say about posting their own, the know their first video and putting themselves out there?
Hannah (23:20):
You know, I think first off, you have to get over the fact that you don't like hearing your own voice. So no one likes hearing their own voice. That is a thing. I mean, unless you're like an actor or a, you know, voice actor or something like that. No one likes their own voice. And I Mm-hmm. This was a, and when I first started making videos, I would then watch it back and be like, Ugh, God, I sound terrible. Like, I, I hate my voice. I, I don't, you know, at the time I could still see a little bit. I was like, I don't like the way I look. I don't like anything about this. Why would I share this with anyone? But I was like, just don't care. Just get over that. Just get over it. Because other people might like your voice, other people might not. You have to deal with that too. But other people might very much like it and just don't care. Basically. That's what I had to get to is just stop caring. And then also in the same thing of my own videos, I make things that I find funny. So there might be some that other people don't get and that's fine. But if I watch it back and I laughed at myself, then I'm like, eh, well, you know, whatever. I found myself funny. So like
Breyanna Willitt (24:29):
Right.
Hannah (24:30):
I like my own jokes, so whatever. Yeah. And that's for me, 'cause I'm doing, I'm doing comedy stuff, but I do stuff that I find funny, but it wasn't, yeah, it was a hurdle to get over. Like, I, I don't like the way that I look. I don't like the way that I sound. And, you know, and in the end it's like, just get over it. Just don't care. It doesn't matter. There will always be people that like it though, and do it for yourself. They always do it for yourself. You know, especially people like making their own videos or making their own TikToks or whatever. Do it for yourself. Don't, don't try to do something that you think that people are gonna watch that like, I'm gonna do this because I think people are gonna watch this. Don't that. I think that's a recipe for disaster. Like, do it for yourself because then you won't be disappointed if no one watches it. You have to do it for yourself.
Breyanna Willitt (25:18):
That is really good advice. And you know, I'm, I'm kind of slowly getting over it. It's the biggest thing for me is like the voice thing. Yeah. It's like, oh my God, really?
Hannah (25:27):
It's hard. It's hard. I like still to this day hate, like when I watch my videos back or I'm trying to edit them or whatever, I was like, I hate the way I sounded when I said that. Why did I say it like that?
Breyanna Willitt (25:37):
<laugh>. So I'm trying to think, is there any other, you know, advice that you would give? You know, especially those who may have lost their vision a little bit later. As you and I have in life,
Hannah (25:49):
I, you know, in the grand scheme it is really, really hard and, you know, it's isolating and it's very lonely. Especially when you don't have anyone else that is also losing vision around you. Um, and you're the only one. And it's a learning process. So I, I do stress that a lot in my videos and stuff of that. I still feel like I'm new to this and I'm, I'm learning this process and, and a lot of my videos are my process going through this of this is a new thing I had to deal with. This is something I didn't think about. And really having people around you, don't be afraid to tell them what you need and tell them, you know, I don't know what I'm doing either. Like, I know that you don't know how to help me, but I don't even know how to tell you how to help me.
Hannah (26:36):
So I'm, I'm learning this as you're learning this. So that's been a process with my friends and family of me trying to teach them how to help me, but me learning how to teach them how to help me. You know what I mean? Like, it, it's, yeah. It's a process and Oh yeah. You know, I think that has helped me a lot of the videos too of like, my way of trying to teach people the things that are frustrating or the things that I'm dealing with has actually helped other people be like, oh, well if I do this, does that help you? Yeah, that's a good idea. Cool. Yeah, do that. That that's helpful.
Breyanna Willitt (27:11):
And again,
Hannah (27:12):
The learning process, I'm not acting like I'm, you know, a pro at being blind. I'm not. I actually suck at it and I'm still learning <laugh> every, every month I'm learning a new aspect. And I'm also, my, my vision is getting worse progressively. So at this point, I probably will be completely blind within the next year, but it's a slow process and I am learning how new technology, I'm learning all about that stuff and all of it is fascinating. So I feel like, you know, everybody give yourself some credit and grace with that, that this is new to everybody. So even being frustrated with other people, not knowing how to help you, but like, we also don't even know how to help ourselves. And trying to figure that out and explain to other people how they can help you. I mean, that's a whole other aspect, you know?
Breyanna Willitt (28:00):
Yeah. That's one of the things, you know, for me, just through this whole process is like patience. You need to have patience.
Hannah (28:07):
So much patience for
Breyanna Willitt (28:09):
Yourself and for everybody else around you. <laugh>
Hannah (28:12):
I was just saying this to my husband too, that I've, I listen to audio books all the time. Mm-Hmm. And I've gotten used to listening to them at a higher speed. Yeah. Because I now get annoyed when people talk really slow <laugh>. And I was like, I know this is really judgmental for me. Like, I, I can't be judgmental of that. People, sometimes people talk slow, but I've find myself, like, I talk really fast and I listen to things really fast. And I think that has gotten more so since I've been blind. I don't think I ever used to talk as fast as I do now, but, but listening to audiobooks and stuff, I listened to audiobooks really fast and now I'm finding myself annoyed with people that talk slow. And I'm like, okay, well that's something I need to, and he just try to recognize, like, some people talk slow and that's okay.
Breyanna Willitt (28:57):
Right. It's so funny that you say that though, because my fiance and I, we share an audible account and Yeah, I have mine, you know, two times speed and then I go back and he has, you know, the normal one X speed and I'm like, oh
Hannah (29:12):
God. It sounds like they're like
Breyanna Willitt (29:14):
Talking like this,
Hannah (29:16):
Like, it's so slow. Like, how do you listen to this? I'm gonna fall asleep just within a few sentences.
Breyanna Willitt (29:23):
Yep. Exactly. Louisa, do you have any questions for Hannah while we have her
Luisa Recchia (29:29):
Actually more comments. This has been so wonderful, Hannah. I am so, uh, pleased to have you really appreciate it. Uh, you know, the one question that I had and and you answered it is, you know, for those of us that are not blind, uh, or have visual impairments, you know, what advice would you give to us? Like what are, what are some do's and don'ts when, you know, we are working with, you know, or, or conversations like this? You know, any advice for us?
Hannah (29:58):
Uh, that's a really great question because I actually really love it when sighted people ask that. I think mostly it's the, it's this talking, it's the saying things. I find a lot of people will go silent and they'll be uncomfortable. And I'm like, just talk, just say things. And it's not like we don't know you're there. We're not, you know, we're not like the T-Rex in Jurassic Park. Like if you're quiet, like, Ooh, I don't know you're there. No, we know you're there. We can feel you. We can hear you. And so just say things like, people will open a door for me and they won't say anything. And I'm like, just say, oh, I'm gonna open the door for you. Just say something or I'm gonna pull out the chair for you. All of those things, I have been so appreciative of waiters that will, you know, they, they'll acknowledge that I'm blind and they will put down, say my water cup and someone will say, your water cup is, is just to the right of you.
Hannah (30:53):
The fact that a would even consider that and take the time to say that, I'm like, you're getting a good tip. 'cause that's amazing. Yeah. Thank you so much for saying that. And I, so I, I'm trying to like train my kids in the past, like three years of just being more verbal, just saying the things I want to know all the information of anything that's happening around me. And if you just talk more and, you know, and also I don't like to be treated differently. I'm like, I'm still the same person. Yes, this is an aspect of me now, but I'm no different than I was before. And, and I, that's hard. You know, especially going from, from cited to not that people treated you a certain way and then suddenly now they're gonna treat you differently. So I've been kind of trying to stress that to everyone around me of like, don't treat me differently.
Hannah (31:42):
I, I know this is, is hard. This is hard for everyone involved. It's hard for me, but it's hard for everyone to acknowledge that there's something different now that they have to, they have to possibly treat me differently. I was like, well, don't treat me differently. Just say more things. That's it. Just, oh, like when somebody's handing you something, oh, this happens all the time. Um, my sister's really good about it. She always says, reach out and I immediately put my hand out and she put something in my hand. Well, other people will literally grab my hand and shove something in my hand. Mm-Hmm. I don't like that. I really, really don't like that. And I've heard other blind people say that too. Anytime you're like grabbed when someone you know is not preparing you for that, your hand is grabbed or something like that.
Hannah (32:22):
It's really disorienting when you can't see it before it's happening. So someone will grab my hand and then grab and then shove something in my hand. I don't like that at all. I really like it if somebody just says, Hey, reach out, I'm gonna hand you something or just reach out. I'm like, all right, I'll reach out. I don't even, it's okay. Take it. The words. You know what I mean? Like, I mean, we're, our brain is able to comprehend what, what you're saying and we are very auditorily vigilant about everything that's happening around us. So if more things are said, I think that that just, it just helps us and it makes everything less awkward for everyone, including sighted people. You know what I mean? How
Breyanna Willitt (32:58):
Old are your kids? If I
Hannah (33:00):
Can ask? I have, yeah, I have ranging from, my youngest is about to be eight in February, and then my oldest is 17, so I have four.
Breyanna Willitt (33:08):
Yeah. So they've been with you then throughout this whole process And old enough to know. So my two oldest,
Hannah (33:13):
So my two oldest is 17 and 14. They are the ones that like remember me more of the way that I used to be. So I think they're, they're the ones that are like, I had a little bit of a harder time, I think. And then my two youngest, which is 11, and then the 7-year-old is about to be eight. And they, I, I think that my 7-year-old will probably never remember a time that I was sighted. He'll probably always remember me as blind. And then maybe my 11-year-old will possibly remember that. I don't know. But yeah, my two oldest are like the ones that are like, they, they've seen this process of, of having to go from, from sighted to not, and all the things that I used to do that I can't do anymore. So I think it's probably, they were the ones that probably it's been a harder transition for, but they've been really helpful.
Hannah (33:54):
I mean, both of them have been really, really helpful during this process. And like my daughters, my, she's the 14-year-old. She has been like my right hand man for everything. And she helps me with like makeup. She helps me with like, I'll put something on and I'm like, does this look okay? Like, does this match? And she'd be like, no, that doesn't look good. And I don't know if she's just saying that in her own opinion or Right. No, it doesn't matter. I don't know. But yeah, I use her for everything and now my oldest can drive, so, oh, he's been so helpful because, you know, it's only my husband that's been the driver, so now my oldest can drive so he can help with like the younger kids', like baseball practices and stuff like that. So.
Breyanna Willitt (34:35):
Right. Those are be
Hannah (34:36):
The best. I waiting for you to be able to drive 'cause you're gonna be helpful to us.
Breyanna Willitt (34:39):
Your personal chauffeur. <laugh>.
Hannah (34:41):
Yes, exactly. That's what I said. I was like, before he could drive, I was like, you know that you're my personal chauffeur now, right? And he's like, yeah, no. I'm like, well, we're gonna pay for your gas, so you will be my personal chauffer
Luisa Recchia (34:52):
The way it works. This is wonderful. This is so awesome. You know, Hannah, you just shared so much information. I'm thinking that, you know, there could probably be a whole session just on terminology, right? Like, I would not have thought to say reach out. And I'm sure there are many more curves or words like that that
Hannah (35:11):
Would be, I didn't even really think about that until you just said it. I was like, I, a lot of things that I, I think like, oh, well, I'm just kind of used to, I forget that like other people don't know that. And when people are not around blind people, they would not even think about that. And then I think back to like when I was younger, I don't think I would've thought of that either. So that, that's a really good point too, of, of things that I think are just normal and maybe even in the blind community, that would be a normal thing. But sighted people don't think about these things because they've never had to. And it's like, and that's fair. There's nothing wrong with that. I mean, I don't blame anyone for not thinking about these things. I've also said before to people that people have a hard time empathizing with blindness because no one wants to imagine being blind. It is a very scary thing and no one wants to even let their brain go there. And I think that is an issue that the blind community has of, of sighted people not fully understanding because I don't think people want to imagine what it's like to be blind. It's too scary.
Breyanna Willitt (36:17):
Wow. That's not the truest statement I have ever heard in my entire life. Right,
Luisa Recchia (36:20):
Right. That, that, I mean, that, that that's the whole podcast. You made her speechless. That is the whole podcast. Oh my gosh. That's
Hannah (36:30):
That whole thing of like, whenever I kind of try to bring myself up again of like getting in a dark place or a sad place is like, you're living right now. You're living the thing that is the next thing that is scarier to death. Like in a poll, people said, besides death, the next thing is going blind. That was in a poll. I was like, holy crap. That other than any disability, the scariest disability for anyone to go through is going blind besides dying. I was like, wow, okay. So this, yeah, like sobered me a lot of, wow, you're, you're living the scariest thing that the average person thinks is the scariest thing that you could ever go through. And you're doing it and you're, you're fine. You're living life, you're doing, you're doing your thing. And I'm like that it pulls me out of a lot of dark places whenever I think about that. Yeah,
Breyanna Willitt (37:25):
Absolutely. And you're rocking it too, so <laugh>, thank
Hannah (37:28):
You.
Luisa Recchia (37:29):
She sure is. I'm so delighted. You know, Hannah, we are actually hosting a family conference coming up this Saturday. It's going to be hybrid, both virtual and in person. We would love to have you be a part of that. We break out into breakout rooms. We have some research discussions, some q&a. Uh, it's a fabulous three, three and a half hours in the morning. Uh, if folks that are coming in person will get the opportunity to tour our lab where they have conducted some research for the visually impaired and some of the various diseases that they focus on. We'll send you the link. I know it's short notice. Yeah. And I appreciate it. But we do that once a year. We also host workshops. We'd love to have you be one of our hosts for a workshop just to, you know, if, for anything to help the sighted world better understand your world. I would,
Hannah (38:27):
I would I love to be a part of anything. Did I, did I mention, I don't think I mentioned like Oh, where I was diagnosed. 'cause you guys are in Michigan, right?
Luisa Recchia (38:34):
Correct.
Hannah (38:35):
I was actually diagnosed at age 10, so that would've been in the mid nineties. I was diagnosed at the Kellogg Center in Ann Arbor. Oh, that was when we lived in Michigan at that, at that time. Yeah. That was, that was where I had to undergo that ERG machine. I think that they were doing like a re a research study around that time was like 1995 Michigan State and the Kellogg Center was doing a lot of like, you know, research about retinal disorders or whatever. Mm-Hmm. So yeah, that was where I was diagnosed.
Luisa Recchia (39:05):
Wow. Yeah, we have our very own. Well, Brey, you can speak to the ARC. Oh
Breyanna Willitt (39:11):
Yeah. So I'm actually, so I live in New York, so every couple months, you know, I head out to Michigan to see Dr. Capone, who's our incredible president of the foundation. And you know, they're out of Royal Oak. Okay. So they have the whole practice and everything there. And then the lab is at Oakland Oakfield University. I can never remember exactly.
Luisa Recchia (39:33):
Yeah. It's Oakland University. Mm-Hmm.
Breyanna Willitt (39:35):
Oakland. Gotcha.
Luisa Recchia (39:36):
Oakland University, which is in Rochester, Michigan. Not too far from the, the practice that's in, uh, Royal Oak and part of the Beaumont, uh, healthcare system. But yeah, so, and we do draw and whether the group really draws people from all over the world. Oh yeah. I surprised. Yeah. You know, this is
Breyanna Willitt (39:56):
Like, I've been, yeah, we've been, I've been in the waiting room and, you know, I've met people from, you know, England and Italy and all these other places that specifically like come to the practice for the doctors and stuff. It's, it's awesome just getting to talk to people, you know, from all over the place. Oh,
Hannah (40:13):
That's so cool.
Luisa Recchia (40:14):
Yeah, it's fabulous. I I'd
Hannah (40:16):
Love to be a part of anything, anything you guys send me. I will, I will make an if, unless I'm doing anything that day, but I will make an effort. I I would love to be a part of anything.
Breyanna Willitt (40:23):
Yeah. I'll send you over a bunch of the stuff, especially for this weekend, and then I'll send Luisa your specific email so in the future she go get workshops and stuff.
Luisa Recchia (40:32):
Wonderful. Thank you. Thank you so much. Stay tuned for more inspiring stories and groundbreaking research on Through Our Eyes podcast. Until next time, remember that every voice, every story, and every effort counts. Thank you for being a part of our mission.
Show Notes
Follow Hannah on TikTok: @Blind&Bored