They said I'd never see again - PAUL CASTLE STUDIO

Hinzugefügt: 2026-05-12

[00:00:00]Welcome back to my channel, Paul Castle Studio. My name is Paul Castle. I am a blind author and illustrator of six children's books. I have a guy dog named Mr. Maple and a husband named Matthew [laughter] who likes to prank me. He's not here right now. He's out actually getting his haircut looking extra handsome and sharp. He'll be home soon and I'm filming this video for you. So, I set up the camera all by myself. Now, if you were here last week, then you know what this conversation is about. It's a continuation of my journey to discovering that I was blind, cuz I didn't know I was blind, okay, until I was 16 years old. If you want to get the full picture, I urge you to um just go, I almost knocked over my coffee. My coffee is getting cold, guys. Here I am again. Where's the mouth hole? Where's the mouth hole? Okay, go back. watch last week's episode, get yourself caught up because we talked about the definition of blindness, the early stages of my not knowing I was blind but trying to navigate life, etc., etc. Um, once you watch that, come back here and we're going to continue the conversation. Okay, I'll wait.

[00:01:15]Okay, y'all caught up? Good. [laughter] Before I dive in, can I just say I'm having a lot of fun. I think I've always wanted to launch my own YouTube channel. Um, I'm just really loving this experience.

[00:01:40]Like, I literally think I have like 6,000 subscribers. I don't care. Like it's so fun to start from zero and just build a community and I have a lot of fun reading the comments and I'm really excited about all the different topics we're going to cover on this channel.

[00:01:56]We're just, you know, I've talked about this before. I like to talk and I decided I'm going to put that energy into this channel. So when you come here to this page, just get cozy. Get your favorite snack. Get your favorite drink.

[00:02:11]If it's tea, if it's coffee, if it's soda, then I'll be here. We can hang together. You know, we're friends. You and I, we're friends. We're friends now.

[00:02:21]And I'm just excited that I get to chitchat with you and tell you some stories and talk about life. But today, we are talking about my journey with being diagnosed as blind at the age of 16. And when we left off, I was just eight years old, pretending like I could see the stars in the night sky because I was too embarrassed and ashamed to admit that I couldn't see the Big Dipper because my big brother could see them.

[00:02:43]The big and little dipper that is. Who knew? There's a big one and a little one. That would be so cool to see them someday. Like I've seen them in a book.

[00:02:52]Like I've seen sort of like how they're supposed to look, but like imagine I don't know. I can't even imagine it because I see life through this pinhole now, you know? And because I was too embarrassed to admit that I was struggling with that, I continued to cover up this deficiency because I thought, "Well, something's wrong with me. Something's really wrong with me.

[00:03:10]And I don't know what it is." And nobody else seems to be having the same problems as I'm having in life. And when you're just a kid trying to make their way in the world and I've already got these big funky glasses on my face, I'm kind of nerdy. I was super super short.

[00:03:27]I was pudgy. I was bullied for being pudgy, short, and wearing glasses.

[00:03:32][laughter] And I was terrible at sports and I was labeled clumsy, Paul the klutz. Um, that was just a badge I wore. I had scars to prove it. You know, I got into a lot of accidents because of my lack of vision.

[00:03:48]And we didn't know why. We didn't My parents just thought I was not, you know, one of these accidentrone kids.

[00:03:54]There was this movie we watched once. My parents rented this old movie. Remember the video store? Gosh, I loved going to the video store, going to Blockbuster, perusing those aisles. You know, I grew up here in Seattle, but I was born in Canada. And when I moved back to Canada, I worked at a Rogers video. Remember Rogers video? Okay. It's like the Blockbuster of Canada. And gosh, I loved all those places. You would just I'm I'm going, this is a little side tangent, but I really miss I'm so nostalgic for video stores right now and I worked at two in my life and you know I love movies you know I wanted to be a filmmaker. I wanted to be the next Steven Spielberg and I had read somewhere as a kid that Quinton Tarantino worked at a video store and a lot of these other famous directors worked at video stores and I was like I need to work at a video store. So I worked at a video store and I was like I'm just in my element in my element.

[00:04:49]Why was I talking about that? Wait a second. [laughter] Oh yeah, we rented a movie. My parents rented this movie called Pure Luck, little known Martin Short film where he plays this guy who just has really bad luck. He's always getting into accidents. And I remember watching that with my family thinking, I'm not alone.

[00:05:11]There's another person who's just prone to being like, this is the thing. Some people, they just they're clumsy. It's just built in them. So, I just thought, well, that was me. Had nothing to do with my vision. It's just who I am. And I felt seen by Martin Short, which is funny because a lot of people now think I am actually related to Martin Short. I kid you not. People will often say in the comments, "You look like Are you Martin Short's son by chance?" I wish.

[00:05:37]Honestly, we're both Canadian and he's the most incredible, funniest guy. I love him to death. And not just because of that initial connection with being accidentrone, the movie version of him.

[00:05:47]Anyway, we have no idea what's going on.

[00:05:50]And this continues for years now. My parents divorced when I was 10. And I think this in some part contributed to the lack of really paying attention to what was going on with me and my continued secret mystery vision loss because, you know, our world was turned upside down. My dad moved away and my mom was struggling with a lot of thing.

[00:06:16]I'll get into this. My mom uh was an alcoholic, still is, and it was a rough time with her alcoholism. Not to get too serious on you, but she did attempt to take her life a couple of times. Um, there were many men revolving in and out of our lives, people that she dated, and we moved around a lot. We were on welfare. We had moved back to Canada. It was a hard time. So you can understand then probably that something like my mysterious inability to see in low light wasn't necessarily a priority in our lives. And I think that was making it harder to diagnose it and pay attention to it. And I was just trying to survive as a kid with a mom who was going through a lot.

[00:07:02]My brother moved away. It was just my mom and I for a little while. And then at the age of 15, I ended up being adopted by my aunt and uncle in a northern rural part of Canada. And it was actually there, it was a bit more of a stable environment that we finally realized something was really wrong. And the thing that tipped us off was I was learning to drive a car.

[00:07:23][gasps and sighs] Yeah. Yeah. I was getting my driver's license and learning to drive. And when at this point, not only was I night blind, but I was losing patches of sight in my peripheral vision. And how can I explain this? That happens so slowly. It's not like one day I woke up and I'm like, wait, I can't see this spot. It was so gradual, the vision loss in my peripheral vision, that I didn't notice it happening. I just didn't notice it happening. But when I was 13, 14, 15 years old, I remember, for example, sitting in class at my desk and my pen, let's say my pen fell off my desk and I would look down at the ground and I just couldn't see it. I was like, "Where's my pen?" It was like a blue pen on blue carpet or something. And I'd be feeling around for it. And inevitably my neighbor would be like, "It's right here." here and they'd pick it up and give it to me and I would feel so stupid and my face would just go beat red because I was one of those kids that just instantly would get embarrassed and you could see it all over my face which only makes it worse cuz people are like why are you turning red? Yeah, that was me as a kid. Okay. And I remember getting to the point where when a pen fell off my like my heart would stop when it fell off because I realized I'm not going to be able to find it. And I don't know why. I'm not even I'm just like why can't I find the pen? I don't know what's going on with me. And I remember once I would have a whole bunch of backup pens and if one fell off my desk, I would just grab a new one so fast as if I didn't even notice I lo I would just have these people must have thought what is going on. He didn't like that pen. I guess [laughter] that was how I dealt with that. Anyway, I So that's, you know, these little signs and symptoms are popping up, but I'm I'm not really understanding what's changed because those those blind spots and that um I guess it would be that being able to detect things with lower contrast was also an important symptom that was so blue on blue with the blue pen on the blue carpet. I was just like I can't see it. But also just being able to locate it got harder with the blind spots emerging. And at that time it's not like the blind spot is a black island in your vision. Like we all have a blind spot, right? We learned that we all have a blind spot and you just don't see anything there. It's like there's just nothing there, right? It's like trying to look through your elbow. You just can't. It's just not there. And the brain kind of tries to fill in what's there with what's surrounding it. So I think that's why it just went undetected. But when I was driving a car and I was learning to drive, it became more obvious because one day [laughter] my aunt and my my three cousins, we were all in the car and it was like, "Okay, Paul, why don't you drive us to school today?" Because, you know, I'm learning.

[00:10:21]I was like, "Sure, why not?" And it just happened to be a rainy morning. So, it's raining and the roads aren't very good and it's kind of darker outside. It's gloomy. It's gray. And I was like going to switch lanes literally just into another car right there next to us. My aunt scre everybody in the car screamed stop and I like swerved out of the way and my aunt calmly said okay just pull right over. We're on the highway but it is rural part of Canada so there's not a lot of cars. Literally I think I ran tried running into the only other car on the highway and she's like just pull over. She was calm about it. She's like, everybody's like freaking out. She's just like really calm. Just pull over.

[00:11:05]And I pulled over. She's like, "Okay, now get out of the car. We'll switch spots." [laughter] And I did that. And then she just said, "You know, I'm going to I'm going to schedule an eye exam." And she called my dad, who was living in California at the time, and she said, "I think something might be going on with Paul's vision."

[00:11:24]And that led down a road of many more appointments. The first person I saw was in that small Canadian town. It was just our local opthalmologist and they didn't really have the tools or the exams to determine what was going on. They were just a little befuddled.

[00:11:46]And so they referred us to another opttometrist in the nearest big city which was actually 3 hours away cuz we lived in again we were in a rural part of British Columbia. And so we went to the big city and if you know BC I'm actually talking about Cam Loops. That was the big city.

[00:12:06]So it was like a 3-hour drive. We went to Cam Loops and I saw a doctor there and they had a visual field exam that I could look into this dome and they were like, "Okay, every time you see the light, you're going to look ahead at this one light and every time you see one of these other lights, you're going to hit this button." And I'm sitting there staring at the light and I'm waiting for a light to appear so I can push the button and they're like, they stop the exam and they just explained it again. They're like, "So every time, so you're looking at the one light, yes, but there's going to be another blinking light. So every time you see one of those, just hit the button. I said, "Yeah, yeah, yeah, yeah. I understand."

[00:12:40]They went back, started the exam, stopped it again. They said, "They didn't think I understood the assignment." What they I just don't think they'd had a lot of patients my age come in with these blind spots because I couldn't see the lights and they just thought I didn't understand the concept, which of course was just embarrassing and made me feel stupid and bad and like something's wrong with me.

[00:13:05]again. I'm like, "Something's wrong with me." But they were like, "Okay, we're going to refer you to another doctor in Vancouver. Another 3-hour drive." Now, this appointment's a couple months later. I went to the Vancouver Children's Hospital. Now I'm working with the the the more serious tech because not only did they have the visual field exams and they put they dilate my pupils and they do the drops in the eyes and they freeze your eyes, but there was this one exam where they literally hooked electrodes up to my eyelids. They put contact special contacts in my eyes that prevent you from being able to blink. It's like they just pry your eyes open.

[00:13:45]And then the electrodes ran from here to my ears. They hung off my ears. They put like this goop on your ears. It's all I don't know. Somehow I'm like connected to these electric wires. And then you stare into this big machine that flashes strobe lights in your eyes, your unblinking eyes, for like five to 10 minutes at a time to get these images of the back of your retina. That wasn't fun. That wasn't fun. [laughter] Has anybody ever seen a clockwork orange?

[00:14:19]Yeah, that's kind of how I felt. But it was what finally gave us some pretty good data. And then they referred me once more to a doctor who was the leading doctor, the leading opthalmologist in all of Canada for patients with retinitis pigmentotosa because I think the results of that exam told them that probably I had this disease, but they wanted to refer me to the leading doctor who could actually diagnose me with that disease. So, the day comes.

[00:14:54]It's Christmas. I'm 16 years old and my dad flew up from California. My mom was living in Vancouver at the time. So, I had my mom and my dad. I They had not been back together since I was 10 years old when they got divorced. And here we were. They were with me at the doctor's office. I had to do the visual field exam again. And it was so exhausting at this point. And I can still remember like what I was wearing. I still remember I was wearing this gray Nike shirt that was like super oversized and I was really uncomfortable in it. And I don't know why I remember that. It was just like one of those little details that like the it was a rainy day. I just remember every sensation about that day and how strange it was to have my parents back together. Um but also how nice it was because they were they were totally getting along. They were just there with love and care and concern for me. And I don't know, I'm getting a little emotional thinking about it actually because they really they really love me. I know that.

[00:16:04]And they loved me very much then and just were really concerned about me. And so I did the tests and I we were called into the office this doctor and we sat down and that's when he said definitively he said you have retinitis pigmentotosa. It was the it was honestly the first time we'd ever even heard those words. And he described that it was a genetic disease and that we would probably want to do the gene testing to see exactly what gene I had.

[00:16:35]And my dad had a lot of follow-up questions. My dad's very business-like, very in sciencebased, and he had a lot of follow-up questions. And my dad wanted to know, you know, is there research on a cure? Like, what's the prognosis? Like, how long before his vision's gone? What can he expect? And the doctor, he said, you know, there's no cure. There's no treatment.

[00:17:03]And there are some studies.

[00:17:06]we're probably 10 to 15 years away from something. And mind you, this was decades ago now, and there still isn't anything. But, you know, it's kind of like the rhetoric they've always been saying is like 10 to 15 years. 10 to 15 years. And that gave us some hope. Uh, but he said, "But, you know, there isn't a guarantee and Paul is going to have to figure out to live a life without his vision because the vision loss is going to continue and there's really not much we can do." My dad said, "Is there anything we can do? Is there any medication?" He said, "You know, maybe more vitamin A." He actually wrote I still I wish I had this piece of paper.

[00:17:38]It probably exists somewhere. I bet my dad has it. He had handwritten on this piece of paper as the followup to this diagnosis. You know what can I do? Eat more spinach.

[00:17:50]Eat more sp those three words live rentree in my head. I mean you would have thought carrots, right? But no, spinach. Spinach is rich in vitamin A.

[00:18:00]The retina loves vitamin A. our vision u those photo receptor cells they need that those vitamins and he just said eat more spinach and [laughter] honestly I like spinach I've eaten a lot of spinach in my life maybe that has helped because you know I haven't lost all my vision yet it's still I'm still hanging on to a little bit of it so maybe it's all the spinach I don't know I'll never forget I will never forget sitting there and letting all of this information sink in because for all we knew we were going to show up and they were going to say oh this is what's wrong and he's going to need a surgery and you know you're going to restore your vision but instead it was this there's no cure this is what it's called and you're going to be blind period end of story and my dad said Paul did you did you hear what he just said because I was just like I had I wasn't experiencing emotion I was just sort of hearing it but it wasn't wasn't all sinking in because I wanted to be brave for my parents. You know, I always felt like I wanted and needed to be brave for my parents. So, I my dad said, "Paul, did you hear him?"

[00:19:13]And I said, "Yeah, yeah, yeah, I heard him." And in a little part of me, I have to admit, I felt a little bit of relief. That was the most interesting thing. I felt a little bit of relief because I for years thought something was wrong with me, right? I t if you watched last week's video and I talked about it again today.

[00:19:36]I always thought I'm clumsy and something's wrong with me. I felt shame and embarrassment all those years.

[00:19:45]Something's wrong with me. And then this doctor is telling me, you have a disease and there's many other people around the planet who also have this disease. There are scientists and doctors looking to treat it and trying to figure it out. And you aren't alone. And all of that shame and embarrassment, confusion, and mystery could be attributed to a disease.

[00:20:14]It had a name. And it made me realize, oh, this isn't my fault. This is a disease with a name. I was born with it.

[00:20:23]And I'm not just clumsy or stupid. Like I don't know how to how else can I say that? It just I felt like [sighs] it all made sense. And there was a lot of relief that came with that. And secondly, knowing that other people had it meant that I wasn't alone cuz I felt very alone in this for all those years.

[00:20:49]And also knowing that doctors were looking for a cure. It was like hope like oh my gosh like I unlocked the door to this mystery that I had been living with for half my life at that point. So that was a complex experience and I did not actually feel any negative emotions around it for three whole years. I was like I came back to school. I was um I guess in my junior year of high school, grade 11, and everybody was like, "Paul, we're so sorry." We all heard, you know, the news spread fast, small town. And I remember just thinking, "I'm fine. It's okay. It's cool." It's not like I lost my vision overnight. I still had what I had before. So, I just felt better now that I had a name for it. And for years, I had this real brave attitude about it.

[00:21:36]And people would always commend me, Paul, you're so you're so put together and you're so brave and you're so strong. And I remember thinking, oh, I like that feedback. That's good feed.

[00:21:46]I'm going to keep being strong. So, it actually wasn't until I was 19 years old at a support group meeting with other blind people living in San Francisco where I went to college that I started to talk about my experience and was overcome with emotion like a damn broke and I just baldled. I remember feeling the sadness and the pain because I felt like I was around people who understood me and I had permission to feel for the first time. So 3 years after I was diagnosed, I finally cried. And I think that's really healthy. I think it's really healthy because obviously there's a lot of pain, a diagnosis like that, it's hard. So being able to emote, being able to feel that in the presence of people that understood me, I felt safe.

[00:22:35]It was a really healing moment. It was a really healing moment. So [sighs and gasps] well, I think I've yapped long enough again for this episode. So, that was my whole story up to the point of being diagnosed. Obviously, we're going to talk a lot more about blindness on this channel, but we're going to take a little break from that because I want to cover a new topic next week. I'd really love to start talking about guide dog related stuff because we all know and love Mr. Maple.

[00:23:09]And I have so much to say about how Mr. Maple has changed my life. How I got Mr. Maple, how we came to be, the process. I would love for this to be a place where it could be a resource for people who are considering getting a guide dog depending on where you are in your own vision loss journey. Maybe you know somebody who's considering to get a guide dog and I want to provide as much information as possible because he's changed my life for the better. So, we'll be talking about that probably on the the next installment of Paul Castle Studio. Again, I just want to thank you all for being here. Uh I love this. I love this. I really love this. I love being able to talk and now it's your turn to talk because that's what the comment section is for. So, I'm going to get into the comments so that we can continue the conversation. Again, I want to remind you if you have any questions about blindness, my journey, what I can and can't see. I would love to do even a visual field demonstration for you of what I can see. Now, my editor, Nat, hi Nat, this is for you. Nat's really good at this. she can show you kind of what I see because I have the pinhole of sight surrounded by the static, but I've also got the dimness, right? I'm not getting as much light in my eyes as you are. And there's a little bit of um a blur to my visual acuity. It can't be corrected uh to a a crisp level. I'm 20 over 60 is my vision. So, [clears throat] that's sort of a simulation, but we'll dive into that a lot more, especially when I get into conversations about how I create art because I'm an artist. That's what I do. I write and illustrate children's books. And if you want to know more about that, you can look at the link in this um below. Okay, guys. Thank you so much. So excited. I can't shut up. I'm talking too much and I've had too much coffee. So, I'm just going to go now.

[00:24:56]Bye.