Living with… Blindness

[00:00:04] Speaker A: Welcome to a Wondercare podcast with me, Sheena Mitchell. Today I'm delighted to be embarking on my second episode of my living with series. In these episodes I chat to people who are living with various medical or intellectual disabilities or illnesses. Anything goes really. This podcast series allows us to learn more about conditions from the person's real life lived experience and ask those questions that we may never be able to ask in everyday life. It takes a courageous and kind person to let us into their lives and I'm so grateful to every single person who lets me sit with them so that we can tell their story. In this episode, I chat to Bobbie Hickey. Bobbie is a 25 year old from Dublin who's now living in Wicklow. Bobby was born with Peter's anomaly which is a rare congenital disorder which which affects the cornea of the eye. A congenital disorder is one which occurs before the baby is born. The cornea is the clear front layer of the eye. In Peters anomaly, the cornea can be severely impacted which can have a devastating impact on sight. Its often complicated with glaucoma which is often from high pressure inside of the eye which can damage the optic nerve which is vital for sending information from your eyes to your brain. Cataracts are a clouding of the lens of the eye. Bobby's experience with Peter's anomaly has left her living with blindness. In this episode we chat all about her condition and all of the medical trauma she's had to endure to get her to where she is today. We talk about her experiences growing up with visual impairment and the impact that had on school and friendships. I was delighted that Josie, her guide dog, insisted on joining the podcast and we hear how Josie helps Bobbie to navigate the world, but also about Bobbie's love for her life changing best friend. Bobbie speaks about her skills at coping with her disability and gives such useful insight on how blind people can be supported within their communities. I ask so many ridiculous questions that I have always been too afraid to ask about living with blindness and I could quite literally not have found a better person to answer them. When I visited Bobbie to interview her, I thought I was going to learn a lot about blindness, but walking away afterwards, I realized that I came away with so much more than that. Important life lessons, inspiring behaviours, and most importantly, a few great giggles. Bobbie is an honest, really cool, fun, determined and powerful person who I feel privileged to have had this chat with and I know I will reflect on her sassan attitude to life often. [00:02:40] Speaker B: Thank you so much for joining me today. Bobbie, can you first of all, explain a little bit about your blindness. [00:02:48] Speaker C: Sure. So thanks for having me, Sheena. I was born blind, fully blind. My parents had no idea of this before I was born. There was no warning signs. Perfectly fine pregnancy, and then I was born. But they didn't realize I was born blind. For the first few hours, my eyes were literally just like dark blue balls, essentially in my head. So the doctors knew initially there was definitely something going on, but they weren't sure to what extent. So after tests and stuff, it was determined that I was fully blind. Born with a condition called Peter's anomaly. Comes with conditions like glaucoma and cataracts and stuff, both of which I have and had. So I got my first corneal transplant when I was three weeks old, and my second one when I was six weeks old, and they were both done in London. And then, yeah, ever since then, I've been able to see to some degree. So up until I was nine, I had a corneal transplant every year, pretty much. And then when I was nine and ten, I got prosthetic corneas fitted in both of my eyes. So, yeah, that's the brief thing. And I can see a little bit now. But to be honest, the last few months have been a bit rocky. I've had quite a number of surgeries recently, and there's been a lot of upset. That, again, is quite hard to describe, but my eyes, the pressure in my eyes basically went completely, and essentially, the easiest way of describing it is my right eye completely deflated, causing part of it to collapse. So that had to be rebuilt. And then my retina detached, I think, three times or up to at the moment in my right eye. So that had to be reattached and stuff like that. The retina detached in my left eye when I was ten, during my second prosthetic cornea transplant, that detached and the eye hemorrhaged and bled and all that, so that my left eye is dead. My right eye is hanging on by oil and a buckle, literally. So, yeah. [00:04:28] Speaker B: So in your left eye, have you no sight? [00:04:32] Speaker C: No. None. [00:04:32] Speaker B: None. [00:04:32] Speaker C: So if you close your eyes, that's what I can see in my left eye, as well as some, like, little. They're called floaters, and they're literally. They are floating balls of, like, color and light, and they're actually really odd. Like, if I'm looking at my floater now and, like, if I look at it really hard and think about a color, it changes to that color. So it's really weird. And when I went in initially, when I lost the size, before the patch was taken off, after the transplant, and. Sorry. The transplant was also successful. It was the back of my eye that completely just gave up, because even though I was only ten, my eye had been through so much at that time. So before the patch was taken off, the doctor was like, okay, all you're gonna see is, like, a bright light. And I was like, oh, God. And then I was taken off, and I can just see darkness, as if your eyes closed. And I know that sounds really bleak, but I'd much rather see darkness than, like, a glowing light the whole time. Cause that would be very distracting. Yeah. [00:05:26] Speaker B: Okay. And in your right eye, so say in your childhood, like, sorry, I just see Josie, your guide dog, looking in the window here at me, and the tail is wagging, and she's making me feel really bad. [00:05:41] Speaker C: Aw. [00:05:41] Speaker B: I know we'll talk about her hair more in a minute, but she's very distracting. [00:05:47] Speaker C: She is. She's very cute. Typical guide dog charity look on her face. So open. [00:05:55] Speaker B: She's contributing now. [00:05:56] Speaker C: Yeah. [00:05:56] Speaker B: Sorry, I need to stop looking at her. I don't think I'm helping. [00:05:59] Speaker C: She would knock both of the mics over if we let her in. It's definitely too late for that now. Apologies. [00:06:05] Speaker B: So in the years, say the early years. So I'm imagining, well, just to start, obviously, I know you can tell us your perspective from your memory, but, you know, at the very start, really, it would have impacted your parents maybe more than you, so they would have received the news that, you know, their baby, you know, had no sight and had to face into that series of operations. Like, how many operations did you have, say, by the time you were roughly ten or something? [00:06:33] Speaker C: Oh, God. So up until I was nine, I was having transplants minimum, like, two a year, because obviously two eyes. So I would get two transplants a year, one in each eye. That could be more if, like, one of them was rejected or something. And then I would have also a little. A small operation that's called an examination under anesthetic. Now, you don't wake up with a patch on your eye or anything after that one. It's very minimal. But when you're a child, obviously, you're. You know, it's easier to examine that in depth when you're able to stay still and stuff like that. So I would have them every six weeks. I don't know how many I've had. I think I'm up to in the. This stage and probably double figure transplants as well, but that scares people. So, yeah, it's a lot, though. [00:07:16] Speaker B: It's a lot. [00:07:16] Speaker C: No, like, when I even now, like, I've had. Since October, I've had six surgeries. And, like, all of them have been pretty major. Like, there's been none of them that have just been little. Little procedures. They've all been pretty gruesome. Like, and when my doctors tell me them, I'm like, okay, grant, like, it's just another day. Like, it's. It is. It's odd. I'm not saying it's healthy. It's an odd relationship that I have because I've had so many of them. [00:07:37] Speaker B: Like, yeah, but you know what's just striking me about that is I'm thinking in my head, going, why are you so positive about all these surgeries? But these surgeries are what are protecting what's left of your sight, in your right eye, in essence. So I suppose you're going to do whatever it takes. [00:07:54] Speaker C: Initially. In the last kind of six months, when this whole big drama started with my eyes, I did actually lose all the sight that I had left. So for the first two surgeries out of this chapter, let's say I didn't have any sight going into the surgeries. So I was kind of like, yeah, work away. Like, you know, it's like, it's a shot in the. I have nothing else to lose. Literally, from about the end of November, I did have a little bit of sight left. So every time I've had surgery, I've had more sight going into it than the last. So that does, you know, you are kind of sitting there going, Jesus, okay. Like, there's something to lose here. You know what I mean? Whereas the first few in October, I was like, Grant. Yep, do whatever. But now these ones, I'm like, okay, I can see now, so let's hope we can keep that at the end of it, you know, because I have obviously had, like, coming out of surgery, I have had the news that, like, I now have nothing compared to, like, my left eye was my good eye when I was growing up. So, yeah, that was. That was rough. But thankfully, that hasn't happened. The doctors are amazing. [00:08:51] Speaker B: And when you say you can see, and this is something I asked you just before we started recording, because it's very hard for someone with sight to imagine or to try and put ourselves in your shoes. So can you explain exactly how much you can see now? [00:09:11] Speaker C: Yeah. So we're just gonna. We'll just do one eye. Cause that's all I have. So I suppose now at the moment I can see. So I can see you sitting in front of me. How far away would you say we are? I guess I would say we're about. [00:09:24] Speaker B: One and a half meters. [00:09:25] Speaker C: Yep. So that's. That's what we're dealing with. And I can see kind of your torso, but I can see the colors of what you're wearing. Can't see your head. Can't see the microphone. I can see, like, the daylight coming in through the windows and stuff. But if there was someone looking in the window at us, I wouldn't be able to see it. I can't read without, like, assistive technology or my phone. Yeah, it's hard to describe. And there's also, at the moment, ever since all these recent surgeries, there is, like, I can see colors as well, like, coming in through my vision that are kind of like neon lights now. They're not there all the time, usually. Actually, when I can see them, it's an indicator that something's gone wrong. [00:10:03] Speaker B: So if it helps, I am wearing a very bright neon orange top today. [00:10:07] Speaker C: Yeah, I can. There's a lot of color going on. I actually thought it was, like, a dark red and bright red. Lovely. Love orange. Yeah. [00:10:15] Speaker B: But nothing is going wrong. It's just a bad choice for it. [00:10:18] Speaker C: No, that's okay. No, it's actually funny, because I was trying to tell my mom this, because she was, you can see light? And I was like, no, mom, I can see the light, like, as in internal, like, in my head. Because at first when it happened after one of the surgeries, I was like, oh, I can see light. And she was like, that's great. And I was like, no, no, no, not like your light. I mean, like a light in my head that I don't think means a good thing. So, yeah, I can see that kind of a little bit. And it's like neon blue. Like, almost like, as if you were able to look through a blue led light. So that it's very distracting. Now, as I said, like, usually it's an indicator that something has gone wrong. So I only have that, like, a tiny bit at the moment. And there have been times where, like, if I was outside at nighttime, for example, or lying in bed, all I could see throughout both of my eyes was neon green or neon purple. And it's like that is, you don't know, distraction until you've dealt with that. Like, that is actually hell. That's hell. Is that. [00:11:14] Speaker B: Does that look like, basically you, you know, in essence, with your eyes closed, trying to go to sleep and you're being blinded by. [00:11:20] Speaker C: Yeah. Yeah. Literally. Yeah. And, like, it doesn't make a difference if the light's on or off right in front of my face or if my, like, eyes are closed or open or whatever. Um, yeah, but, like, yeah, it's. It's weird. And thankfully not the case anymore. But there were times, like, during this. During this time in October when I had to stay in hospital for a few days because I was on steroids to try and increase the pressure in my eye. Plot twist didn't work. But when I was in hospital, I had to wake up one morning to go and see one of my consultants. And my partner was staying in the hospital with me. We were getting ready, whatever, and I was like, oh, would you mind just turning on the light? And he was like, oh, the lights on? Like, we slept with the light on last night. And I literally had no idea. Like, I thought it was pitch black in the room. So that was one of those moments, definitely, where, like, you know, you feel it in the bottom of your stomach. You're like, oh, God. Okay. Like, this. This is serious. Like, you know, because I'm always the kind of person that, like, I don't ignore things, but I'm definitely an optimist. Glass half full. Like, you know what I mean? Like, it's never. It's never serious until you let it get serious. Blah, blah, blah. And, like, obviously the doctors did sit me down and they were like, you know, this is a very serious situation. Like, you know, we don't want to scare you, but, like, you prepare for situations in your. In your career where you see separate things in separate cases in your situation. They've all happened at the same time. So there were conversations like that and, like, I. The severity of the situation was never lost on me. But I suppose when. When you're in that practical situation and, like, Colin was just like, yeah, the light's literally on. Like, it's fully daylight outside. And I was like, oh, my God. Like, you know? [00:12:58] Speaker B: Cause. [00:12:59] Speaker C: So, yeah, when that happened, I was like, okay, it's real. [00:13:02] Speaker B: Does that ever, you know, like, you are a really positive person, but, you know, it's all fine and, well, being positive, but everyone falls every now and again. Like, how is that the kind of thing, you know, obviously that's. That's a very low point. So how do you cope with that? Or do you find it easy to get yourself back to positivity or, you know, how do you manage? [00:13:27] Speaker C: Yeah. Yeah, it is hard. And, like, I will say, like, thankfully I have some sight now, and I actually don't know how I can still see. I'm not sure even the doctors know how. Like, it's actually. It's incredible that I can still see. I think about it every time I'm outside and I'm able to look around. I think, like, God, like, everything that's happened in the last few months, my eye literally caved in on itself, and I can still see. Like, it's incredible. But, no, it does. Like, a few months ago, when my sight was a little bit worse than it is now, I was outside, and my friend was like, oh, it's such a nice sunset. And I was like, oof. Like, I couldn't see. I couldn't even tell the ground from the sky. So I had to go into my head and find a little stock image that I have of a sunset. Like, it's. It's grim. Like, so I suppose in those moments, what I do is I kind of just sit with it because there's no way around it, you know? Like, it isn't. Like, at that time, you know, I did have a feeling that I was gonna have more surgery. So I did kind of say to myself, okay, well, hopefully it'll get better. But then also, you do have to acknowledge, like, that's it. You know, that's what you have right now. That's. This is reality. You might not be able to see anymore for the rest of your life, you know? And I kind of. I don't limit myself, but I do try to only do it occasionally. I kind of sit there and go, right, this is what you have. Like, and just let myself feel the emotions. Let the emotions come in and let the thoughts come in. And then I find when I let myself do that, I either get bored or something else comes up, and then I just move on. Do you know what I mean? And then you do have times where, like, recently, I moved house. Don't recommend moving house in the middle of a medical crisis, but I had no choice. And we moved house, and the house is a lot better than the one we were previously living in, but it's a little bit further out from the town, so there's about a 25 minutes walk to get into the town. So learning that walk was one of the hardest things, like, I've ever had to do. And my guide dog is incredible. Josie's, like, my best friend. She is amazing. Like, I owe everything to her, all my independence, and, like, she's class. But we both found that really challenging because it was the only route that I've ever done that I have never seen properly with this out that I had a few months ago. So I'm learning different landmarks. She's kind of getting used to my new level of sight. So the whole new level of learning going on for the two of us. And there was like four or five days where I couldn't leave my house unless someone was able to come and help me. And that was like, that was horrendous. Like, that was really, really hard and there was no real way around that. Those were just a really hard few days. And in those moments, I kind of thought to myself, I was like, how am I going to keep going? Why am I going to keep going? And the answer is, because I have no choice. And I want to, because I want to be able to leave my house, because I want to be able to live an independent life. And it's really hard. Like, there's no easy way about it. I'm not. I didn't enjoy the process one bit. Like, it was actually horrendous. Like, whenever a car would pass me, I'd look at it and go, please. It was awful. It was, it was really, really bad. But the only way that I kept going was I have no choice in here because either I learned this route and I'm able to go and get my coffee in the morning, or I don't learn the route. And every time I want to leave the house, someone has to help me. And that's really annoying and a pain. So it wasn't easy, but that's just how you do it. You give yourself no choice and you say, do I want to do this? And if there is, if you really do want to do it, you will find a way to do it. You know what I mean? You won't let yourself stop. And there are hard moments where I'm like, oh, my God, all I wanted to do was 02:00 in the afternoon, sit there and do nothing for the rest of the day, and obviously that is fine. This is our third attempt trying to record this podcast because in one of the days I was trying to learn the route and I got back home and I was meant to record this and I was like, I'm just not, you know, being open and vulnerable is really important, but when you're annoyed at the world, which I was that day, it's, it's, it won't be, it wouldn't have been productive, if that makes sense. There's a difference to do it. And I was just like, I hate everything and the world is not fair and I can't go and get my coffee and I'm like, I just, it wouldn't have been the same, but that was where I was that day, you know what I mean? So it happens and you need to learn to. And something I'm learning as well is just to sit with it and to acknowledge it and then, sure, I know the route now, so. [00:17:37] Speaker B: And actually that is one, that's a really big takeaway point for me personally. And I'd say pretty much everyone listening, that's such an important life skill, you describing just sitting with it and actually allowing the emotions to wash over you because, you know, you can waste so much energy on anger and frustrating and anxiety and stress and worry and of course, you know, all of those emotions are allowed. [00:18:07] Speaker C: Yeah. [00:18:07] Speaker B: But if you just allow them in as well and actually experience them so that then you're, you are in a position to be able to, to grab the good ones when they come, I think. Yeah, it's a nice thought. And to be fair to you, the second episode recording was my fault that. [00:18:23] Speaker C: That didn't work out well. I hope this third time lucky, like this is gone well. But no, I think, I think as well over the last few months because there were times where I wasn't able to use my phone and that's been the goal. Like, me, me and the doctors, whenever I see them, they're like, can you use your phone? And if I'm like, yes, good vibes, no bad vibes. [00:18:41] Speaker B: Another surgery. [00:18:42] Speaker C: Like I remember from kind of mid October to early November, I wasn't able to use my phone at all. I was in hospital for five days, couldn't use my phone. And like, I don't even know. I'm thinking back now. I know I was getting steroids every 6 hours up to the consultant every day. Other than that, like, that takes 20 minutes. I have no idea what I was doing for the rest of the time because I couldn't use my phone. I think I walked every inch of the hospital and I think because I wasn't able to go on my phone and listen. Like, I love social media, I love going on my phone. Like, I'm in no way bashing it. But I think possibly because I wasn't able to go on my phone during those really hard times, I wasn't really able to distract myself, do you know what I mean? So I had no choice but to sit with it. Like you have nothing else to do but sit there with your emotions, you know what I mean? So I think that's helped me. So take from that what you will, I don't know, put down your phone and sit with your emotions. [00:19:29] Speaker B: Yeah, that's huge. [00:19:32] Speaker A: I'm just going to pause for a second to give a big shout out to my supporters. Salon Plus. Salon plus is the world's 1st 100% natural dry salt therapy device. It's clinically proven to relieve a wide range of allergens and respiratory conditions. The salt therapy method has been trusted for generations and is now hugely popular worldwide. More and more people are recognizing the superb results achieved from a natural and non invasive method. This device helps you to breathe easier and sleep better. [00:20:04] Speaker B: Maybe it's because I'm a parent and I'm trying to imagine how I would deal and all of the issues that would arise from having a baby who's blind. Obviously you have your healthy, happy baby and you're delighted, but there are other things you need to prepare for life. It brings childproofing to a whole new level. [00:20:24] Speaker C: Yeah, definitely, definitely. [00:20:26] Speaker B: And safety and your child maybe not being able to see hazards or dangers in front of them. So it's probably a lot of learning for parents to do in that situation and even social integration. Do you know much about your earliest playdates and being social as a child? [00:20:47] Speaker C: Probably my earliest playdates were with my neighbor, which, I mean, you know, you have your neighbors, you see them in passing and stuff. She's about my age, so I think my mom and her were friends already and I think, you know, naturally gave birth around the same time. So I think that's how it happened. I'm not too sure, but I know in school, so you have to remember is I a had two working eyes at the time and they were both a lot better than the one I have at the moment. So I never was able to kind of do ball sports and stuff and like play chasing or whatever, but I would have been able to like pick up on more visual cues than I would have been able to now. So I suppose I'm speaking from a different perspective than what I'm living in at the moment. But school, I guess I'm like, I'm very outgoing. I would talk to the wall if no one was around. So I suppose that's probably how it happened. I know, like my parents and stuff, they've always just pushed me forwards. Like, I don't know how they managed to find the strength to bring themselves forward and me forwards and they never said no. They never didn't let me do something because my condition isn't one where I had to limit myself to activity when I was younger. Different situation at the moment, but now I was slower to do things. But again, like, I was never told, no, I was never told, you can't do it. I was also never sat down, I don't think, and told, you know, by the way, you can't see if I was. It was. It was a lot later, but I don't remember ever having that conversation with my parents now. That's just the way they chose to do it. But, yeah, I was always told, yes, yes, yes. And, like, very lucky situation. I was able to take part in loads of extracurricular activities in my school, did sports and stuff as well. I was just blessed with the people I have around me. They're just so encouraging and so full of confidence in me that I could do it and also in themselves that they could help me do it. Even if they were faking it. They didn't let on. Sorry, Josie's climbing the window to try and get into here, but, yeah, so that was it. All the people around me and stuff and just constantly encouraging me. [00:22:35] Speaker B: That's amazing. And I can see, though, you're the kind of person who. You give an inch, it'll take a while. So you're oozing positivity yourself and, you know, I can't imagine that's just a recent phenomenon. [00:22:47] Speaker C: No, definitely not. [00:22:48] Speaker B: Yeah. So I'd say your enthusiasm for life probably was good feedback for them that they were doing a good job. [00:22:56] Speaker C: Yeah. I mean, I guess I'm just. Big bundle of joy. That's what we're going with today. [00:23:02] Speaker B: Bobby, have we had too much coffee? [00:23:05] Speaker C: Yeah. No, no. Drinks have been consumed too early. [00:23:10] Speaker B: Can I ask you about braille? So, braille is something that I assume every child who has visual impairment will need to learn. [00:23:21] Speaker C: Yeah, I did not. I did not learn braille. Still don't know Braille. So when I was, like, six or seven in school, I was given the option that I didn't. I can't remember what subject it was, but I had an exemption. And my parents were like, do you want her to learn braille, or do you want her to learn how to touch type? And they chose touch type. And I personally am very grateful that they did that. I'm a very good touch typer now, which is. Which stands to me in every way. So I have no idea how to rebrail, no idea how to type it. I tried to learn it when I was in fourth year, and it is so complicated. Like, genuinely, anyone who is braille literate? Like, it's like another language. It's mad. And my friends have braille computers and stuff and braille books and everything. It's crazy. So, personally, I don't read it. The only time I ever find that an issue is in lifts. I can't press the buttons in lifts because I'm terrified of pressing a button that will, like, I don't know, drop me to the floor or something. So I don't do that, which is a bit of an issue, to be honest. But that's the only time I ever find it annoying. [00:24:27] Speaker B: That's a big thing, though, because, you know, I suppose lifts are a lot of places, and that's just something so practical that I would never actually think of. [00:24:37] Speaker C: Yeah. And you know what? It's probably a little bit silly on my part. I should learn the numbers, because Josie is not allowed on escalators, so I know. Not that I avoid the stairs, but sometimes a lift is just more practical. So, to be honest, that's probably on me. I probably should learn the numbers in braille. [00:24:51] Speaker B: You're gonna. You're gonna have to. [00:24:52] Speaker C: This is your sign if you're blind and you don't speak braille. Sorry again, Josie, trying to climb in. Learn the numbers. [00:24:58] Speaker B: Josie, you can have your moment at the end. [00:25:00] Speaker C: I'll take your photo. [00:25:01] Speaker B: Absolutely. [00:25:01] Speaker C: She can give the mic a big lick. Yeah, yeah. Okay. [00:25:05] Speaker B: Just hold on. [00:25:06] Speaker C: Yeah. [00:25:06] Speaker B: It's not your time. Okay, so, yes, definitely learn the numbers, Bobby. [00:25:12] Speaker C: Learn the numbers. I know, yeah. Sorry, I'm too busy having my eye rebuilt over here. I'll just. [00:25:16] Speaker B: You're just being lazy. [00:25:17] Speaker C: Yeah. All that time in hospital, that's what I could have been doing. [00:25:20] Speaker B: Exactly. Multitask, for God's sake. Just. You were talking, obviously, a lot about school and your friends there. So did you go to a mainstream school? Or did you go to a school, like, is there schools for people with blindness, or. How does that work? [00:25:37] Speaker C: So I went to a mainstream school. I don't know if there is. I kind of assume there is, but that might be naive. I have no idea. I went to a mainstream school. My parents wanted that to happen, but it was very difficult. They actually couldn't find one to send me to. And actually, as it happens, my dad was attending a philosophy class in the school of philosophy. And a principal of a primary school was there in the class, and he was kind of explaining the situation. And she just said, yeah, we'll take her. And that was it. So that was John Scottus. So it was a mainstream school, but they practiced, like, meditation and mindfulness, and they taught Sanskrit, which is an ancient indian language, so mainstream, but definitely had its quirks. But, no, I have a lot of happy memories from that school. It was very good and they were very good to me as well. It was new to everyone. But in fairness, like, they really stepped up and I was there until fourth year, so. Very happy time. Yeah. [00:26:30] Speaker B: And. Because I suppose, yeah, there would have been a lot of practical things. And do you find it hard if you're going from, say, a physical space that you're used to navigating your way around to finding your way around buildings that you're not familiar with must be much more challenging. [00:26:46] Speaker C: Yeah, it is. And I always find that a little bit, like, I know everyone says, don't worry, you're. No one's looking at you, but, like, you always worry and you always feel like everyone is always looking at you. Even now in spaces that I know very well, but I'm getting used to having this limited sight. It's weird, like, because I'm always. I always feel like I'm bumping into things and Josie is better outside than she is inside, because when I'm in, like, a confined space. Oh, my God. Sorry. She knows whenever I'm talking about her, she tries to come in. Yeah. Whenever we're inside, it's a confined space, so she goes slower than she does when she's outside, so I always feel like I'm like a massive, big bumpy thing going around the place, so. Yeah. [00:27:30] Speaker B: And when did you get Josie? [00:27:32] Speaker C: I got her three years ago. [00:27:34] Speaker B: And is she. [00:27:35] Speaker C: Four years ago. Sorry? 2020. [00:27:36] Speaker B: Is she your first guide dog, Josie. [00:27:40] Speaker C: Hi, Josie, welcome to the party. Can you not let out now? Like. [00:27:45] Speaker B: Okay, so just for the listeners, Josie wonder. [00:27:49] Speaker C: Yeah, Josie's now in the building. [00:27:50] Speaker B: Josie's here and she's helping us. [00:27:53] Speaker C: Yeah. If the mic suddenly go, it's because a big Labrador has knocked them over. But, yeah, she's my first guide dog. I got her in 2020 and she's five now, and she's mad, but she's incredible. So. [00:28:06] Speaker B: And they have to go through a lot of training. So she trained before you get her? [00:28:12] Speaker C: Yeah. So I got her when she was two and they kind of train kind of from when they're six or seven weeks old, but it starts off with a lot of, like, household stuff. So they go, no, sorry, I don't work for the guide dogs, but this is all my own knowledge. So they go to a house for kind of six weeks when they're really tiny puppies, once they're vaccinated and stuff, and they will get used to the sounds like the washing machine, the hairdryer, the hoover, that kind of thing. Because obviously you have to remember that blind people can't necessarily see their dogs. So, like, I have accidentally hoovered Josie's bed with her on it and she doesn't care now. She kind of moves around a little bit, but she won't, like, she won't run up wet, run away and kind of do the usual things that dogs would do because obviously that's terrifying. So they get used to that when they're really small. And then they go back to the guide dogs, I think, and then they're sent away to the puppy raisers, which I think is what most people know from the guide dogs. That's where they go to really kind people that have them for a year. Those people will then take them out to, like, restaurants, the cinema, that kind of thing. And they'll wear the yellow high vis vest. That is when it kind of says, like they're in training or whatever. And so that's the puppy raisers. And then after that, when they're used to being out, when they used to have all their social skills and stuff, then they're determined if they'll be a guide dog or an assistance dog. I think that's roughly how it happens. Once it's determined, then, like, what kind of career they'll have, I suppose. Then they're taught the niche like skills. So Josie knows loads of phrases that not like every other dog would know, you know what I mean? So. And I don't know, maybe assistant's dogs know some of them, I'm not sure, but Josie would be able to, like, if I tell her to find the way when she's working, she's like, okay, Grant, I'll find the way. [00:29:49] Speaker B: Yeah. [00:29:50] Speaker C: You know, so, yeah, those niche skills come in when they're about one and a half, I think. I don't know, I could be wrong. [00:29:55] Speaker B: But, yeah, that's amazing. [00:29:57] Speaker C: Yeah. And I got her when she was just two. She was two in July, I got her in August. [00:30:01] Speaker B: And I imagine the bond between you is just incredible. [00:30:05] Speaker C: Well, I mean, she just tried to climb through a window to get me. [00:30:07] Speaker B: So she won. [00:30:09] Speaker C: Yeah, she did. She always wins. I owe everything to her, Josie, my parents and my friends, that's. And the doctors. Joseph. Sorry. Rebuilding my eye over here. And I'm not giving them any credit. [00:30:20] Speaker B: Yeah, they're fine. [00:30:21] Speaker C: They do a little, but yeah, part time gig. [00:30:23] Speaker B: Yeah, exactly. [00:30:24] Speaker C: Yeah. [00:30:25] Speaker B: Josie's working all the time. Although you were explaining to me, and this is actually a really interesting thing to understand for people, because I know, you know, as you said there, guide dogs will always have kind of some sort of indicator that they're working so that you're not distracting them. And you shouldn't really pet or start to distract a dog who's working. Yeah, but you were explaining when, you know, when you're in your home and you're relaxed, she's just chilling now. She's just a dog. [00:30:53] Speaker C: Yeah, she's. [00:30:54] Speaker B: Yeah, she's able for the cuddles. Absolutely. She's so adorable. [00:30:58] Speaker C: Yeah. So, like, the way I do it, like, is if I'm sitting down and stuff in a restaurant and her harness is still on, I don't mind when people come up and say hi to her. I always prefer you should always ask, but if I'm sitting down, having a coffee or at a meal, or, like, if I'm in an appointment and I'm sitting and I don't have to do anything with Josie at that moment, it's fine for people to say hi. If I know it's going to be a long appointment or a long dinner or whatever, I usually take off the harness, and then, of course, it's fine when the harness is on. Yeah, she's usually working, but sometimes it is okay if I'm, like, seated as such. But Josie's indicator is the harness for work. [00:31:32] Speaker B: Okay, so she understands harness on is work time. That's really cool. [00:31:36] Speaker C: Yeah. And actually, she's able to do routes with the harness off and she knows, okay, I'm not working now, but then the same route, if the harness is on, she's like, okay, this is work. [00:31:45] Speaker B: Wow. [00:31:45] Speaker C: Yeah. [00:31:46] Speaker B: So clever. Okay. And when she's working for you, so if she's guiding you up a busy road, she's making sure that you're not kind of banging into obstacles. [00:31:58] Speaker C: Yeah. [00:31:59] Speaker B: Does she, does she know about steps and paths? How does that work? [00:32:02] Speaker C: So it's kind of confusing because I think a lot of people have a perception that guide dogs think people are obstacles, but they understand, like, living to, you know, a stationary bin. So when people are walking towards Josie, she's. She has the impression that, okay, they can move around me. And I don't know if this is the same for any other guide dog users, but Josie, like, she puts her head down and she plows through people. So I have had collisions in the past now. I don't know, maybe. Maybe Josie could have helped me out. Maybe the other person could have helped me out, I'm not sure. But when it comes to steps and stuff and curbs, she stops at every step on every curb, because I give her a treat at every step on every curb. There's a difference between her stopping at a curb and her stopping when she's unsure of an obstacle in a path. For example, if she sees a bin and a pole and there's a really narrow space that I can walk through to get past, she'll slow down and she kind of looks at me, but her body doesn't change. Whereas when she's coming to a curb or step, she slows down, looks up at me, and she pretty much sits in front of me until I give her a treat. So that's the indicator. And when we come to, like, an obstacle with, like, a bin or a pole, I say, okay, good girl, find the way. Find the way. And then she finds the way. And if she can't find the way, she stops. And then there is usually an awkward few seconds where I have to kind of try and assess the situation. And I usually talk to her in the hopes that a sighted person around me will say, oh, do you need a hand? Or. Oh, sorry, there's just this in front of you. Let me give you a hand around it, or whatever. [00:33:35] Speaker B: So, yeah, that's actually a really good cue for sighted people as well, because I know a lot of the times people. Well, I presume it's both ways. First of all, you'll have people, you know, helping you when you don't want help. And second of all, you'll have people not helping you because they're afraid to interfere. [00:33:54] Speaker C: Yeah, and I actually have examples of this from both sides, and both people meant no harm, but both were very scary in that. So one of them, I was walking, this happened this week, and this happens pretty much every time I leave the house, actually. But one of my favorite things that you sighted people do is you go silent when you see a blind person. So now I can't hear you or see you. So. And Josie, when you're not moving and you're still, Josie doesn't, she treats you like an inanimate object. So I was walking, and this person had moved into the side. I had no idea. And I just, I knew I was passing something because she kind of gave me the indicator that, okay, inanimate object on the left passing, blah, blah, blah. So we slowed down or whatever, and I was like, good girl, Josie. And at the same time, what I thought was a green bin, sneezed, and I literally was like, oh, my God. Like, it terrified me. And this person, like, no problem. Like, they weren't doing anything wrong. They didn't. They had no idea. Whatever. But it's just funny that, like, when you see someone coming, that obviously is slightly impaired in whatever way, for me, obviously, it's the visual impairment. Everyone literally goes silent. And sometimes they don't even move. Sometimes they'll stand there in the middle of the path and still just stay silent. And it's just funny, because they don't. They don't think about it. There's no malice in it. Like, there's no one is setting out to make my life ten times harder, but, like, I can't see, so I need you to make more noise. You know what I mean? Like, don't shout at me, but it's never a bad idea to talk to someone. Go, oh, hi, sorry. I'm just here on your left, or I've just got a buggy passing you on your right. Like, no problem, you know, I'm a person. I have a dog. You can talk to me. And then, on the other extreme of things, I was at a bus stop, and I was. I do stand at the edge of the path, so I suppose it does look a little bit alarming. But I have no way of letting the bus know that I can't see the bus coming if they can't see josie. So I do stand at the edge of the path, but just standing there, minding my business, waiting for the bus, and then all of a sudden, an arm goes, like, around in between, like, my neck and my chest, like, genuinely, like, across my collarbones, and just goes, oh, Jesus. Watch. And I lost my life. I was like, oh, my God, like, what? [00:36:01] Speaker B: Like, what are you doing? [00:36:02] Speaker C: And he was like, you're waiting for the bus. I was like, you can't just come up from behind me and put your arm right across my chest like that. Like. And he pulled me into him, like. And he was like, I'm sorry, I'm only trying to help. And I was like, I know, but you just gave me a heart attack. Like, you can't. That is so unsafe, terrifying for anyone. Like, you can't do that. You know, you need. Tell me that you're coming, or walk up to me and go, sorry, are you okay? Do you need a hat? What busts are you waiting for again? He didn't mean anything by it, but, God, that was. That took a few years off my life, I'd say in that instance. Yeah. [00:36:31] Speaker B: And I can imagine, you know, I think I've probably, when I actually think about it, I may have been guilty of being a silent, frozen lurker myself. [00:36:40] Speaker C: Because everyone does it. Everyone does it. Yeah. [00:36:43] Speaker B: And you're just, I suppose you're trying to make yourself invisible, which isn't helpful because you're already invisible. So Josie is obviously fantastic and is, is much happier now that she's close to you. So. That's so cute to see. You mentioned a few things there that are really, I suppose, annoying that people do, even though their, their heart is generally in the right place. [00:37:06] Speaker C: Yeah. Yeah. [00:37:07] Speaker B: Is there anything else like that, that, you know, for me, it's refreshing to hear that I'm allowed to offer help, to be perfectly honest, to have to hear that the permission is there, that it's not rude to say to someone who has a guide dog if they're looking a bit lost. Like when you go, say, to the supermarket or around a shopping center or anything. Like, when is it helpful to offer help? [00:37:32] Speaker C: Well, I suppose it's not up to you to know when it's helpful. You know what I mean? Like, it's never a bad idea to ask for help. There's a right and wrong way to do it. Like, if you're gonna walk up to someone and go, oh, sorry, you look really confused. Like, what are you doing? Like, that's obviously not helpful, but going up to someone and saying, like, oh, hi, sorry, can I, can I get you. I'm just picking up a few bits myself. Do you want me to help you find anything? I've got a, I've got a ton bit of. Of time. I'm not in a rush. Like, it's no trouble at all. And I suppose, like I said, it's not up to the person who's offering help to know when it's appropriate. Like, because there are sometimes when I go into a shop and I'm in a massive rush and I'm like, oh, my God, okay, I really hope someone just realizes that I need help so I can say, actually, yeah, can you please try and help me find X, Y and Z? And I'm in my head going, thank God, because this person's just shaved ten minutes off my trip. Like, you know, but that's. How are you? How is anyone else to know that? So it's always a good idea to offer help and just in the most polite way possible. And remember, you're talking to the person and not the disability. [00:38:28] Speaker B: Do you still use your cane? When did the cane come in and. Yeah, how useful is it? Or pros and cons. Just out of curiosity. [00:38:36] Speaker C: Yeah. So I'm not a cane fan, and that's just personal opinion. That has nothing to do with it. Like, a lot of people use the cane and the guide dog. A lot of people would rather the cane then the guide dog. So it's nothing to do with the cane itself. It's just me personally, I just. Oh, I've. I named her Barbara. And, um, we don't get along. She's redundant at the moment. Um, she's been taken over by Josie, who is a lot cuter than her. But I got her when I was 15, and I avoided, avoided, avoided. And then one day when I was walking in to do my junior cert, I got knocked down by a cyclist and ended up literally airborne. Lost both my shoes, landed on my knees and my hands. And the cyclist, in fairness, fell over as well. Bike landed on top of him. And, yeah, that was a big shock. And I remember I was actually going in to do maths paper, too, and I was like, okay, now I have to go in and do this exam. Like, what the hell? I just literally got knocked down. But, like, when I think about it now, like, genuinely could see, like, less than 5% walking across a road in Donnybrook. Like, a busy road on Donnybrook. Like, what? You know what I mean? Like, it's just. It's mad. But anyway, so that was my avoidance at the time, and that was at a time in my life where I was not okay with my visual impairment, with blindness. Like, I thought blind. If you would call me blind, I would have taken it as an insult. Like, I was completely against it, really didn't. Like talking about disabilities. I thought it was a really bad word, and it's not at all. But, yeah, that was the time of my life. And I remember I came home, and I was expecting. There was a sympathy from my mum. And when I came home, she was like, well, it's your fault. Where is your cane? And I was like, what do you mean? She was like, how was he to know that you couldn't see? And I was like, eh, what the hell? So we ended up having a big argument, obviously. And she was. She was right. But at the time, I didn't know. And I remember her saying, like, if I see you walking out without your cane, you're. I'll take your phone or whatever. Like, and we live in an area that, like, you would see me. Do you know what I mean? Like, it would be my luck. I would step outside and everyone and my mom would see me walking without my cane. So, in fairness, I did start using it from that point, and it was my mum who got me over the edge. Well, my mum and that random cyclist. So I did use it from that point on. Yeah. [00:40:47] Speaker B: Okay. If, like, presumably that is something that people need to step out of the way of. [00:40:53] Speaker C: Yeah, yeah. Oh, yeah. Well, I mean, they would trip you up, like. So, yeah, I would definitely step. And the one thing that I like is a guide dog has a brain. So Josie's gonna be like, big hole. Do not walk down big hole. Whereas, like, cane, I control the cane. So if I miss the big hole with my cane, it's still possible for me to fall down the hole. So that's why I don't like it, as well as all the kind of social appearance and stuff like that. It just isn't. I don't like it personally, but as I said, like, my friend uses a guide dog and a cane, so. Yeah. [00:41:24] Speaker B: And I can totally get that. And it's easy to understand, especially if you happen to be an animal lover anyway. [00:41:31] Speaker C: Yeah. [00:41:32] Speaker B: Why? You know, you'd love having a little friend, too. [00:41:36] Speaker C: Absolutely. Yeah. It is a responsibility, though. Like, she is a dog, you know, when she's not working, it's. She has, like, she has gastroentinitis, so she has her special food. She's a celiac, so she's all these things other than a guide dog, so. Yeah. [00:41:50] Speaker B: Okay. And obviously, we're talking a lot today about technology. When you say you're using your phone, can I just ask, can you see your phone? Do you need, like, magnification on that or special apps or what kind of technology do you need? Or can you see? [00:42:07] Speaker C: Yeah, so I have an iPhone, and on the iPhone, they have, like, integrated, large text, so they actually have an accessibility section in settings. And so my text is massive on my phone. This is a bit of a hot topic at the moment, because, again, if I can't see my phone, my surgeons aren't happy. So I can see my phone right now. There have been times where I haven't been able to, but it is difficult for me to see it in the morning. Gets easier as the day goes on. So my text is very big. I do have to screenshot pretty much everything, and there are apps that help me. Like, there's an app called seeing AI, and you can hold up stuff to it, and there's different settings, and it'll read it out for you. It'll read it, it'll describe an image. Like, if I was to hold it up here now, it would be like, woman. Woman with microphone. So there's different things that you can get. I am in the middle of getting help from Visionarland who are teaching me how to use a software called fusion. To be honest, I'm really not tech savvy, but there is technology out there that is full of shortcuts and verbal cues on how to use a computer. I'm not the right person to describe it, but it is out there and I'm learning it at the moment. [00:43:14] Speaker B: Okay. [00:43:15] Speaker C: Yes. [00:43:16] Speaker B: And taking it back a step. So when you were in school, how did you manage, say, you know, obviously you had some sight then, but things like seeing the blackboard or learning to read and write, how, how did that work? [00:43:29] Speaker C: So when I started school, initially, four year old child, I had a lot more sight than I have at the moment. But my first three years as a child in school, I was put at the back of the classroom with a pair of binoculars. And that was three. No fault as a teacher, but, like, no one knew what was going on and I was four. I couldn't advocate for myself. Like, everyone was like, are you okay? And I was like, yeah. Sharingrand. Like, I was always fine, but like, could I see? Not really, no. So, yeah, no one knew what was going on. And obviously that was incredibly stressful for my parents when they found that out because I wasn't really going back home to my parents being like, oh my God, by the way, I sat at the back of the classroom. Like, I would absolutely do that now. But as at four, I didn't know that was a necessarily not how it should have been done, if that makes sense. So they only found out like three years later. Yeah, that was obviously very stressful for everyone else around me, but I was always like, what's the problem? But, yeah. So learning how to read and write was a struggle. When I was ten, in fifth class, I got a screen, a massive screen called the eclipse. And I would, like, fold the screen up and I would put a book or a copybook underneath it and I'd be able to see my hands and stuff, which actually is disgusting now that I think about it, because I used to buy my nails and you could like, it was like a big massive screen, like, so that's how I read and that's how I wrote. And then also actually moving on from the binoculars, very 21st century, there will be a camera that would go at the top of this and it would always, like, you would switch it so you could look at the blackboard. But I'm laughing because me and my friends used to do things that we should not have done with that camera during the class. Oh, my God, it was so bad. Like, you could turn it back to face you. Oh, stop. Was so funny. Yeah, it was. That was. That was what I had. But I only got that when I was ten, so when I was ten, like, that was the first time that I saw my own handwriting and that I was able to read without, like, taking my eyeball out of its socket, like, basically. [00:45:19] Speaker B: So, yeah, it's a whole other challenge, and as I'm hearing you describe it, I just wonder, I suppose you've grown up all the way with this challenge from birth, and obviously, look, there's been highs and lows along the way, and there's been times your sight has been good. Well, now, when I say good, I mean there has been good for me. Yeah. Good for you. [00:45:42] Speaker C: Yeah. [00:45:43] Speaker B: And. And, you know, I wonder what your opinion is on the difference between, say, someone who has sight and then, say to an accident or something, loses their sight completely versus, you know, the situation you find yourself in. Obviously, look, there's no good scenario here, but I'm just trying to imagine having full sight and having to adjust learned behaviors in a different way. [00:46:16] Speaker C: Yeah. And I guess, like, I've kind of gone through that over the last few months. Of course, I've never had full sight, but my sight was a lot better in October than it is now. I cannot imagine losing your sight, even to a degree, let alone going fully blind from being fully sighted. Like, it's terrifying. And I will say as well, it's very lonely. Like, I was always around people. I was never left on my own, but, like, not being able to see, there is this other world that you have in your head. Of course, everyone has their own voices in their heads, but when you can't see and you have to make up your own surroundings, like, it's a very isolating thing. And I remember, like, sitting in the hospital, never being alone, but also being really lonely at the same time. And it was just terrifying because you can't describe it to people, you know? Like, it's really odd. But on the flip side, depending on your situation, for me personally, it didn't affect my health, my, like, you know, my well being and stuff. And I remember sitting down, like, having a. It was a very serious conversation after the first surgery. I'll never forget it. Like, it was one of the most tense 45 minutes of my life. I horse ride as one of my hobbies, and I haven't done it for a while, of course. But, like, at the time, I remember asking, will I be able to go back to this? And they weren't sure if I'd be able to do it at the time. And I just remember thinking, oh, my God. Like, I. I don't need a full. I don't need to be able to see, to live a full life. I just need to be able to ride. I just need to be able to do my sport and do my hobbies. So it's very easy for me now to be able to sit here and say that. And it was hard for me to think it at the time. You know, at the time when the doctor was saying, I don't know if you'll be able to go back to riding, part of me was like, okay, grant, take the eye out. Give me a glass eye. Like, I can't. Like, I'll live without being able to see, but I will not live being able to do my passion again. It's very easy for me to be able to say that because I, of course, have experience. I can't imagine losing your sight. But I will say it is possible. It is possible to live a full life, but it is really hard. It's lonely. It can feel isolating. But if you stick to doing things that you know and keep people around you, that you know, like, it will take time and you'll learn to live life at a very slow pace, but then eventually, you'll build up pace again. You'll have on this bulletproof vest that you just learn to develop, because all of a sudden, walking into a door is part of everyday life, and everyone's like, oh, my God, are you okay? And you're like, yeah, whatever, it's grand, but, like, it's obviously not fine, but, like, you know, you're not going to have a breakdown every time you walk into a door because it happens so often. Like, so you do, you learn to live with it. But it's very hard. It's a very. It's a very isolating thing to happen to a person. [00:48:44] Speaker B: How do you feel about the future? Are you afraid? Or do you feel now that, you know, you've learned so many skills and you've built up, got, you know, your environment and your friendships and your relationships and yourself to be resilient, that you feel like you'll be okay? [00:49:09] Speaker C: Yeah, I don't. I don't know. I think, ugh, the future is so like, I don't know how to describe how I feel about the future, to be honest, because I don't know what's gonna happen. I am a go with the flow kind of person as long as I know where the flow is going. And I don't know where the flow is going. So, yeah, it does terrify me a little bit, to be honest. Like, I'm 25 now. Will I be able to see by the time I'm 30? Like, I don't know. And what kind of is more terrifying is the doctors don't know either. Just ask them, do you think I'll be able to see in five years? They will look at me and go, I don't know. And that's nothing to do with them. And I'm okay with them doing that because it doesn't make them any less. But am I okay with that being the reality? Like, not really, to be honest. Like, I have oil in my eye at the moment, keeping my retina in place. And your retina is the part of your eye that kind of brings the visual messages from your brain to your eye and vice versa, as such. So mine has come off a few times, and obviously, when it's off, it doesn't, you know, it doesn't work, basically, so that your eye and your brain aren't communicating with each other. So that's what happened. That's how I lost my sight recently, and one of the reasons. So my retina at the moment is being held on by oil, and it's so far, touch every bit of wood that you can, listeners, please. But at the moment, it's stable. But the pressure or the oil comes with symptoms like increasing my pressure in my eye. And when your eye pressure is, the higher that gets, the more stress your optic nerve is under. So it is a reality that my eye will only be able to cope with this pressure for so long. Pressure will probably get worse, and there is a very good chance that my optic nerve will give in at some point. And we don't know. Is that next week? Is it now? Is it in three years or five years or ten years? We have no idea. But there is a very, like I have been told, you know, that's probably the inevitable, but I don't know when and I don't know how. So that's kind of scary. But even in terms of, like, do I want kids? I want to be able to see my kids faces, or, like, if I ever compete with my horse, I want to be able to see the crowd around me like, that kind of thing, but I don't know if I'll be able to. So I like control, and I like plans, and I like to know what's gonna happen, but the situation has taught me, like, make plans and the universe. [00:51:20] Speaker B: Will laugh at you. [00:51:21] Speaker C: You know what I mean? Like, you have no idea what's gonna happen. And I'm not really okay with that, but I'm learning to live with it, and it does kind of scare me, to be honest. But a controlled fear, if that makes sense. It's not fear where I'm not gonna make a rational decision. It's not fear where I'm gonna avoid surgery to. To not make it better. You know? I don't have a fear of surgery, so it is kind of scary, to be honest. The unknown. [00:51:46] Speaker B: Thank you for answering that. I know that's actually really not easy and find that hard to imagine. And I suppose in. In my head, I'm always trying to find ways to comfort people, and you're like, obviously, there's nothing I can say but philosophical. Sheena is like, yeah, well, we could all be dead next year anyway. [00:52:08] Speaker C: Well, that's. That's it. Like, you know what I mean? And as I said, you know, it's not a life threatening thing. Now, also, the other side of that is I could get hit by a bus, but so could you. So, yes. Do you know what I mean? Now, obviously, I am at higher risk of getting hit by a bus, but. [00:52:23] Speaker B: Actually, since we've walked into this room, there's only one person who's banged their head off something, and it wasn't you, it was me. So. [00:52:29] Speaker C: Yeah, well, I mean, that's because this is my house. I know my way around it. But, yeah, no, like, obviously, like, there is this out of it that, like, unless, you know, the universe is really cruel and life. Life is unfair. I'm not gonna die because I'm visually impaired. Do you know what I mean? So. And that will scare some people, and a lot of people won't find that comforting. And there are also people that aren't as lucky as me that do have illnesses and that aren't in my situation. They can't sit back and go, oh, well, I'm not gonna die because of, you know, whatever I have. But luckily and thankfully, I'm able to say that. And that that helps me because as I said, when the doctor was like, I don't know if you'll be able to ride, I was like, okay, well, I can't live then. Like, do you know what I mean? I need to be able to do my hobbies, but I don't say any of this, like, light hearted. Like, it's. It's very difficult, but you do learn to deal with it, I think, as well. Like, I probably come off as very, like, nonchalant about these things and very light hearted, but it's just my life. I'm used to it, but it is hard. It does affect me, but I suppose I have a very dark sense of humor, and that is what gets me through. But the severity of situations isn't, like, it's never lost on me. But, like, would you rather laugh or cry? Do you know what I mean? So both are healthy at times, but I would rather laugh. [00:53:44] Speaker B: Yeah. Yeah. And I can understand that. And on that note, again, not that any of this is funny, but hilarious. Hilarious. This is the podcast of Lols. [00:53:57] Speaker C: Yeah. It's a comedy podcast. [00:53:59] Speaker B: Watch out, Joanne McNally. [00:54:01] Speaker C: Oh, God. You should get her own. Find some. Find a reason. [00:54:04] Speaker B: I'm, like, living with. [00:54:06] Speaker C: Living with. Didn't she get Botox? Botox in her knees and. [00:54:12] Speaker B: I know, sorry, this is totally random, tangent, but she's doing that Afro Levine podcast at the moment, so maybe living with a love of conspiracy theories. Yeah, yeah. [00:54:21] Speaker C: There you go. John, get in touch. [00:54:23] Speaker B: Are you listening? [00:54:24] Speaker C: Oh, my God. [00:54:27] Speaker B: Putting it out there. It's the universe. [00:54:29] Speaker C: Yeah. Okay. [00:54:30] Speaker B: So one thing that struck me when I was trying to rack my brains about what would be difficult if I had no sight. And one of the first things that struck me was clothes shopping. [00:54:43] Speaker C: Yeah. [00:54:43] Speaker B: Like, there's just so many levels on which this is difficult. So, first of all, obviously, you know, if you can't see the clothes, I'm thinking in a vain level about what if someone makes me wear something hideous? You know, like, yeah, no, it's practical. Like, yeah. And how do you see the sizes on clothes? And, like, do you go off texture? And obviously, I know you can see some color, but I presume you need to have a very trustworthy shopping buddy. [00:55:15] Speaker C: Yeah. Like, so I have to. This is just, again, my personal opinion, or, sorry, experience. But I have to be okay and ready to talk to people every time I leave the house. I can never leave the house and not talk to someone. So when I go shopping, I first of all, always try and do it online, but at the moment, that's not really possible for me. So I usually go with my mum or, like, one of my best friends who knows my style, who knows, like, my insecurities, and who knows, like, my fit on things that make sense now, obviously, I also know what I like and what I don't like. So if I'm looking for skinny jeans, if I'm looking for baggy jeans, like, that helps. Of course, it does help that I can see some color, but it is, like, a lot of it is relying on other people to be honest, because. Because if someone doesn't point something out to me, I'm usually not gonna notice it. Now, there are times, like, when I'm feeling on the rack and stuff like that. Like, I can pick out things myself, but I'm not gonna be able to look around the shop. I can't do a big scan of a shop. So a lot of it is trust in who you're with. And if I'm on my own, to be honest, I've never gone close shopping on my own. I do it online, and I need to ask for help in those situations sometimes as well. And in that case, I'll just screenshot, send the girls a picture. Be like, do we like, do we not like, what are we thinking? If I have, like, a situation where I'm buying it for, I'll be like, I'm thinking of wearing this to this. But, like, a lot of people do that anyway when they can see. Do you know what I mean? Yeah. It's just relying on the people around you again. [00:56:38] Speaker B: Yeah. As you said there, that is fairly universal, you know, as in, yeah, I have no sense of style. So. I agree. [00:56:46] Speaker C: Orange is very in at the moment, I hear. So the trend, people say, yeah, we hope so. [00:56:54] Speaker B: One other thing, cooking. So, yeah, yeah. How is cooking? [00:56:59] Speaker C: I actually love cooking, but I do stick to vegetarian dishes. No, sorry. Okay. I'm very lucky in that I have a thing called a ninja speedy. And you can do, there's ten different settings on it, and you can literally, like, grill a steak or slow cook a lamb or, like, anything. Like, you can do loads. I'm really lucky to have that. I only got it recently, so previously, yeah, I would use the pan and stuff, and I would never. Like, for example, when a recipe says, put a chicken breast in a pan, I'm like, okay, no, not doing that. I can never tell when it's done. So, like, my chicken breasts are done 15 minutes in the air fryer, and that's it. Like, I have no other way of eating a chicken breast. That's how I eat a chicken breast. In the same way that chicken skewers takes the same time in the air fryer. There's no give or take. That's how long they take. So I'm very routine based, but it's because I have to be, if that makes sense. But cooking is once I'm in my own kitchen. And the great thing is about being in my own kitchen. I know where things are. I've put everything where it is, so I am able to make a mess. I'm able to find everything. But, for example, cooking in my parents kitchen, I don't know where everything is. And I find that very stressful. But again, ask for help. And I. I do. Like, you do avoid certain things. Like, I don't cook things in a pan, like I said, or like, I won't roast a chicken because I just. That's too scary. And I will never know if it's done or not. So once I'm given a time and a temperature, then I do it. But other than that, there's no, like, oh, just like, pop in and wait until it, like, browns. Like, no, there's no blockening over here, 15 minutes. [00:58:37] Speaker B: And actually, that's really clever, the air fryer thing, like. Cause it is. Just bash it in. That makes so much sense. [00:58:43] Speaker C: Yeah. Like, very lucky to have it. [00:58:45] Speaker B: What about money in terms of handling cash and paying for things? Like, obviously, I'd imagine the whole tapping bonanza has made things easier. [00:58:55] Speaker C: Yeah. So my mom taught me how to kind of use coins and stuff by feeling the ridges. So a 20 cent coin, the ridges are spaced out. And then a ten cent coin and a 50 cent coin are very, like, close together ridges. But if a ten cent coin is smaller than a 50 cent coin and also smaller than a ten cent coin, and then a €1 is smaller than a two euro. And also, if you hold the €1 up to the light, the middle is silver and the outer is gold, and then a two euro is the opposite. And then the notes, a fiver is the smallest. And to be honest, notes are difficult. Now, that's one of the things where I'm kind of like, I'm at a stump, because I'm like, right, okay. I can't really read a note at the moment, unless if I have a five euro and, like, another one to compare it to, I can compare a size because they all get bigger with, you know, the value that you have on the note. But, yeah, that's something I haven't really figured out now. But previously I would read the number on the. On the note, but I suppose I could probably read it now. To be honest, everything is hard at the moment. So. [00:59:53] Speaker B: Do you know what, actually, though, that isn't that actually crazy notes don't have any tactile. [00:59:59] Speaker C: There's no braille or anything. Yeah. [01:00:00] Speaker B: What's that about? I actually thought. See this as something never occurred to me, and I think that's innately wrong. [01:00:05] Speaker C: Yeah. I mean, it's probably never occurred. Sure. It didn't occur to me. I didn't think you could put Braille on a note, but I suppose you could. Of course you could. [01:00:10] Speaker B: So start a little campaign. [01:00:12] Speaker C: Yeah. Learn the numbers again to be like. [01:00:14] Speaker B: Bobby wants one peak cash. I don't know. [01:00:17] Speaker C: Hashtag, that's all the money. [01:00:21] Speaker B: I'm not sure if that one is gonna take off. [01:00:23] Speaker C: Yeah, no, probably not. [01:00:24] Speaker B: Yeah, we'll go for it. [01:00:24] Speaker C: Yeah. [01:00:25] Speaker B: Reading a random question. Just before we started recording, you were telling me about sleep. So just to explain the difficulties that being blind or visually impaired can have on your sleep routine. [01:00:37] Speaker C: Yeah. So, I mean, I don't know if this is correct, but I heard someone say that blind people make less melatonin because they can't tell the difference between night and day. Obviously now I can. So I presume that means I produce it. Like, I'm not a doctor. I don't know. But. So I produce a certain amount of melatonin, but obviously not as much as a sizer person would produce it. Yeah. It's not unusual for. For blind people to have, like, really bad problems falling asleep, because they just can't tell the difference. The people that can't tell the difference between day and night, you know, it's. They're so strong. Like, it's so hard. Like, sure. Everyone talks about how the sunlight and stuff and, like, the longer evenings and that fine stretch and all that. Like, it improves everyone's mental health. I remember standing outside the hospital door with my dad, 11:00 in the day. Like, so broad daylight, sunny day, and he was like, can you see the sun? And it was like I was standing underneath a streetlight, like, at night, like, the sky was dark, like, and the sun was like a tiny little led streetlight in the sky. And I remember just being like, oh, yeah, I can see the sun, but nothing else. And I remember, like, holding up a coffee cup and just going, oh, I can kind of tell the difference between the coffee cup and the coffee lid. And at the time, we were like, that's great. But now I'm, like, so hard. So, like, that's, like, grim. Like, you know, like, that was another really hard time, and that was one of the better days during that time, you know? [01:02:00] Speaker B: So I'm seeing you a lot, reflecting on times and having realizations of where you coached yourself through a scenario and your family of positivity and gratitude. So I suppose for. For what you had at the time, but on reflection, you're like, oh. [01:02:20] Speaker C: Oh, Jesus. Like, when I think back to the last few months, like, it's actually been so hard, almost comical. Like, we're getting to the stage now where if I need another surgery, we just sit there and laugh. Because it's like, are you actually joking? No, it's been. It's been really hard at the time. I'll always see the positive and things a sense of humor gets me through. And, like, my family's very much that way anyway, so we will always laugh through situations, but it has been really hard. And, like, when I think about, like, my parents and stuff, I've never seen two people hope for something more to come back than they have been hoping for. My sight every hour. Any changes? Can you see anything else now? And it got to the point where I was like, yeah, it's all come back. And they were like, oh, shut up, Bobby. Because they just, like, they just hoped and hoped and hoped, and, like, I hoped as well, of course. But, like, it's when you're. When you're the one going through it, like, and you're able to, like, literally see what's in front of you, and you're kind of like, okay, well, it's been this way for this amount of time. So that either means this is it, or I'm having another surgery. So at the time, we were all still hopeful that it was gonna come fully back. You take what you can in those situations, but it doesn't make it any less difficult. Like, at the same time, like, when I was looking around and going, that's so good that I can see that. I was also like, oh, my God, that's all I can see. Are you joking? [01:03:33] Speaker B: Random question number 348. [01:03:37] Speaker C: Yep. [01:03:38] Speaker B: Dreaming. So I know you've had some sight. So when you're dreaming, do you see as a fully sighted person, or are your dreams a carryover of what your day to day sight is like? [01:03:54] Speaker C: So at the moment, my dreams are what my sight used to be, if that makes sense. So I've never dreamed as a fully sighted person. I wish I could, because then I could be like, right, sure. I'll just memorize what that road looks like, and I'll just drive down it tomorrow, but unfortunately, I can't do that. So my dreams are as I saw kind of this time last year. If that makes sense. And you know what's actually really weird? So they're probably gonna find this really odd if they're listening, but basically, I. The two surgeons that I met. So odd to say out loud. The two surgeons that I met in October, I had never met previously before. But judging on their voices and their kind of demeanor, and, I don't know, just their being, like, they're probably like, what the hell? But you kind of take everyone in, like, when you meet them, of course, even if you can see, you do it. But I had an idea of what they both looked like, and I couldn't see them. And then when my sight came back and I saw them, they're literally like, are you joking? And I went into the room, and I could see them both, I was like, oh, I was right. [01:05:05] Speaker B: Oh, that's really funny, isn't it? [01:05:07] Speaker C: So they're probably sorry, but that's actually. No. [01:05:10] Speaker B: For a minute there, I thought you were gonna end with. And I was really disappointed. [01:05:14] Speaker C: Oh, yeah. And I was so disappointed. None of them were holding a magic wand. What the hell? Yeah, but, no, they're probably like, okay, that's really weird. But, yeah, no, obviously, because you hear them speak and you're. They have their body language and, like, obviously they're surgeons, so they're very serious, and they have a way of. I don't know. No, I will say the one thing that I did get wrong is that I picture them both in scrubs the whole time, and they wear suits. They're very well dressed individuals, but, yeah. [01:05:41] Speaker B: So that could be changed. [01:05:42] Speaker C: Just. Yeah, I mean, put on the scrubs. [01:05:44] Speaker B: Like, make the dream. [01:05:47] Speaker C: Where's the crazy anatomy scrub cop? [01:05:48] Speaker B: Like, can I ask you, actually, you mentioned tv, so, you know, you have some sight. And basically explain to me how does watching tv work? Does it work? And do you know as well if people who are fully blind will watch tv in the same sense in terms of listening or is that enjoyable, to watch tv without picture? [01:06:10] Speaker C: Yeah. So I guess, like, everything. Like, I can see a little bit of what's going on, so that obviously helps. But the most effective way for me to watch tv is on my phone because I can hold it really close up to my face, and then I can see more. And also, I'm not gonna be able to fall asleep holding my phone. And if I do, I'll know about it, because I'll drop my phone if I watch tv. Say, like, whenever my friends, I just want to have a movie night or whatever, I have to sit there on my phone. Because if I just watch the tv from kind of, even if I'm close, like they're really good, they'll put the tv up really close so I can see it. But it's never going to be the same as on my phone. Like when I tell you I have a close, it's like in my head. So you're never going to be able to do that with the tv. So even when I'm watching tv with people, even if it's really close up, I always fall asleep. I just, I can't because my brain doesn't have anything to concentrate on and it's really exhausting listening. So I never make it through a movie. So series are the way to go with me personally or a documentary or whatever, but I find it very hard to watch tv that's not on my phone, but I can't do it. And also there is audio descriptions in sky and everything that are good. It's not on. Everything. I will say, I don't think it's on the Harry Potter series, which is unfortunate, but yeah, for me it's okay. Like it's not my favorite thing to do with people, but yeah, it's doable. [01:07:20] Speaker B: Podcasts are obviously amazing. [01:07:23] Speaker C: Oh, we love podcasts. [01:07:24] Speaker B: That's what we're doing. [01:07:25] Speaker C: Yeah. [01:07:25] Speaker B: But in general, there's, sorry. Now I'm just actually on a total tangent, but I actually love listening to like podcast series. [01:07:32] Speaker C: Oh, podcasts are great. Yeah, yeah. [01:07:33] Speaker B: So there's so many other ways to enjoy, I suppose, media. [01:07:38] Speaker C: Yeah. And also like audiobooks and stuff and as well, like TikTok is great. Like, you don't necessarily need to be able to see, you know, I mean, I'm sure it's, I'm sure it'd be lovely to be able to see what's going on, but I can't usually, like when someone's like doing like a grocery haul, like I'm like listening to what they're getting, but I can't see what they're getting. You know what I mean? But like, I'm just saying that I've never been able to see that, so I don't know, like, I'm sure it'd be lovely, but like also I'm technically not really missing out on anything because I've never been able to do it. So I just, it's always been the way for me. I just scroll, scroll, scroll. Now I can see more than I could a few months ago. [01:08:11] Speaker B: Probably a lot that you're better off not seeing to be perfect. [01:08:14] Speaker C: I suppose I remember talking to someone once, like, who has full sight? And I was like, can you see the individual leaves on the tree? Like, as we're walking past, I was like, can you look at a tree and see the individual leaves? Or, like, when you're, like, walking down a corridor and you see a notice board, can you see every bit of writing on the notice board? And they were like, well, yeah. And I was like, that is so distracting. Like, I can see the tree. I can see, like, the. If a tree, you know, has no leaves on it, I'll be able to see some of the branches, but just the really thick ones, do you know what I mean? Like, I won't be able to see the individual, like twigs. And then if a tree has leaves, I can see, like, the darkness of where the leaves are. Sometimes I can tell the color, sometimes I can't. If I'm walking past the notice board, I can see, like, white sheets of paper. If I'm up close, I'll be able to see, like, the pink and the white ones or whatever, but I can't see the writing. Like, they all look blank to me unless there's, like, a picture on it. Like I say, that's so distracting to be able to see all that. You know what I mean? [01:09:06] Speaker B: But more than you'll have to try to block out some of the sounds. [01:09:10] Speaker C: Yeah, exactly. [01:09:11] Speaker B: In the cinema, I suppose, you know, you don't read everything you come past either. Yeah. [01:09:17] Speaker C: Yeah. Like the only time I wish I could read, like, the only time where I'm like, oh, for God's sake. Like, that's so annoying is when I'm out for dinner and I can't read a menu. Like, that's so annoying because sometimes someone will be reading me on a menu and they're like, like, if it's someone that I'm not out with regularly, they might not know that I see fish as friends and not food, so they'll read out all the fish. And I'm like, huh? Like, it's. I don't want to be like, can you just, like, skip the entire section? I don't want to be rude or whatever. So then they have to read out the whole thing and I have to listen to the whole thing. And so that's the one time where I'm like, oh, my God, this is. This is so annoying. But obviously people are trying to help. [01:09:49] Speaker B: All of these little things. Is there anything else that you think sighted people should be aware of? To be less annoying and to be more supportive? [01:10:00] Speaker C: God, I suppose my biggest thing is just always talk to the person and not the disability. It doesn't make you any less to have a disability, like any disability, not just visual impairment. You go through different things in life, and everything you go through leaves you with more life experience. One thing I find funny, as we spoke about people going silent when you walk past them earlier, sometimes it's happened to me now, this isn't everyone, to be fair, but it has happened to me in the past where I'll be talking to a sighted person, and they'll talk to me. Like, they'll put their face really close to mine, and they'll talk to me so loudly, and it's like, the problem is with my eyes. Like, I don't hear through my eyes, you know what I mean? Again, they're trying to be helpful, but they just don't realize that they're doing it. But, no, I think the biggest piece of advice that I can give is just talk to the person and not the disability. I know it's probably a really awkward thing to ask for help. You're always better off to ask. Like, a lot of people are scared to say the wrong thing. A lot of people are scared to offend, but saying nothing is saying the wrong thing. If you're really rude to someone, they'll either ignore you or they'll let you know. So I would always just be polite, talk to the person and not the disability. And also, as well, if you're curious about it, ask, like, if anyone ever sees me, you can ask. One of my favorite things, actually, is when I'm walking past a parent with a child. I remember I walked past a dad with his kids, and he was like, oh, guys, like, this dog is a superhero. And she helps this lady to, like, move around obstacles because she can't see very well. The dog helps her move away from, like, bins or poles, or the dog will slow down so the lady doesn't hurt herself. And I was just like, oh, my God. So that's one of my favorite things to hear. So it's never a bad idea to explain and also never a bad idea to introduce, you know, your. Your kids or to ask questions or whatever. Of course, not everyone is gonna like, I'm literally an open book, but not everyone is gonna be like that. So, you know, you might not get the response that you're hoping for the whole time. And we're not encyclopedias, obviously, but you might not know. You could be like, for me, for example, if I'm in the shop and someone goes do you want a hand? I'll always say yes, like. Cause that's. That's great. Now, sometimes it's a little bit awkward to ask someone to find, like, toothpaste and an avocado, but I get. That's so funny. Like, there's this shop on Winkler that I go to that I can never find things. And I was looking for jalapenos and crisps and I was like, that just sounds so odd, like, saying it out loud. You always have to say your shopping out loud to people. Like, it makes you think about what you're getting, you know? And also they're like, do you want the multi pack or the single? And you're like, maybe the single, but also the multipack. [01:12:24] Speaker B: Yeah, like, I actually want the multipack, but I don't ask it. [01:12:27] Speaker C: Yeah, how big is the single? There's so much that happens being blind. Like, you have to be very brave, obviously, you have to be medically brave and stuff like that, but, like, you have to be brave and talking to people. Like I said earlier, I have to be okay with talking to people every time I leave my house. It's just. You always have to be okay with putting yourself out there. I find Vision Ireland is like the National Irish Centre for all things visually impaired, blind and accessibility. They have, like, a community worker, they have occupational therapists, it support. They have people to help you read Braille, independent living courses and stuff. And of course, the guide dogs are incredible. Big waiting lists, but absolutely incredible. And they actually. I don't know if a lot of people know, but they also do live in. Where you can actually stay in their center in Cork and you can do an independent living course. I did one, to be honest, more for social reasons, when I was younger, but it was actually. It was great crack. And, like, you learn a lot, like. So, yeah, I would definitely recommend either of those organizations, Vision Ireland or the irish battle dogs for the blind. Both are really good. Full of really, really resourceful and just humble people who are doing it because they care. I would definitely recommend those two. [01:13:33] Speaker B: Thank you so much for that. And thank you so much for talking to me today, because, honestly, this whole series is about breaking down barriers and letting people through me ask all the questions I suppose we want to know and are maybe afraid to ask or maybe just we don't understand certain conditions and what the reality of living with them is. Like. You have been actually such an amazing advocate for people who can't see fully. And it's. It's really been hugely insightful and actually humbling. And your dark wish is I meet. [01:14:13] Speaker C: People very awkward sometimes with that. [01:14:15] Speaker B: I have to say. I like it, like, a lot. [01:14:18] Speaker C: This is such a good series that you're doing because it's so important to have these conversations. And for people that don't have disabilities to be talking about it, that do have disability to be talking about it, we should all be talking about it. And I think the more we do, like, the less kind of stigmatized it'll become. So it's it's so refreshing to, to hear. Hopefully people are interested, and it's great to hear becoming part of the normal conversation, you know? So thanks for doing it. [01:14:40] Speaker B: We all have fear of the unknown, and I'm very lucky to have found someone like you who's so open and brave and willing to explain. So thank you so much, Bobby. It's been great. [01:14:52] Speaker C: Thanks for having me.