Episode Transcript
[00:00:03] Speaker A: It's said that you don't know what you have until it's gone. What if, however, you lose it when you're too young to remember having it in the first place?
Or what if you have to watch it fade away over years or even decades?
Welcome to the defending Vision podcast, where this blind man shows you exactly how he sees it, hardship, humor, and keeping a vision alive. Throw on some headphones for the full audio experience. Experience one day at the end of my senior year of high school, I was in a classroom preparing to present my independent study project.
I built a small wind tunnel and an even smaller wind turbine as an experiment. My friend Mike was hanging out and helping set up.
As we worked, a parent who clearly did not know me entered the classroom, remarked that I really should have color coded all of the wires, and then proceeded to leave without missing a beat. Mike said, you're not even colorblind. You're the regular kind.
And with that, a story was born that has been told many times.
In reality, though, that category of regular kind is massive. Blindness can mean complete darkness.
It can mean simply losing central or peripheral vision, or something in between. Eyesight can be lost in an instant or over years or even decades.
The story is different for everyone.
Personally, I was diagnosed when I was three years old. I have a brain tumor that sits in the optic chiasm, the region behind the eyes where the nerves travel from. The eyes cross and then reach the brain with visual information.
My tumor sits precisely where those nerves cross, affecting eyesight from both eyes.
At three and a half a nine hour brain surgery was performed to remove roughly 60% to 70% of this tumor.
My earliest memories are from the hospital just after this surgery. I don't know what eyesight I had beforehand, but I know that after I had none in my left eye and only shadows, shades of grey in my right eye, high contrast dark objects on a light wall, things like that.
Since then, I have been on a myriad of chemotherapies and other treatments to maintain the remaining portion of the tumor at the smallest size possible.
Those with various medical conditions will know that no change or stable is considered a big win.
For years, my remaining eyesight was painstakingly measured until, at around 13 years old, I was declared completely blind.
Today people ask me, is it just darkness? And my answer is no. And I don't know if this has to do with the fact that I had some eyesight earlier in life or not, but I would describe myself as a very visual thinker.
I always have a visual image of my surroundings, of course, this comes from touching and hearing what's around me, not seeing it.
And when working on things like 3d printing, for example, I have no problem visualizing the three dimensional part in my mind.
So while I grew up never having eyesight that I could truly trust, every shadow I saw could either be a pull I might run into or an actual shadow cast by a tree well overhead.
Others have had very different experiences.
Today, I'm bringing you part one of a conversation with my good friend Daria Zawatsky and her brother, Isaac Lidsky.
These are two absolute forces of nature, academically, professionally, and personally. Their stories are amazing. I think you'll find them fascinating, moving, and inspirational. They are both excellent role models to anyone blind or sighted.
So without further ado, welcome to our conversation.
It's such an honor having both of you on the show. Daria, you and I have known one another for many years now. Isaac and I clearly need to connect more. Let's start with the basics. This is to both of you. When did you begin noticing problems with your eyesight? What was the ultimate diagnosis, and how has your eyesight changed since then?
[00:04:42] Speaker B: Why don't you take it first? Because I think I'm going to take.
[00:04:44] Speaker C: It first since I was diagnosed.
[00:04:46] Speaker B: More logical chronologically.
[00:04:47] Speaker C: Yeah, I was thinking that. So, I mean, I started noticing significant issues by high school. Isaac and I and our older sister all have retinitis pigmentosa. We have a recessive, very rare genetic disease. So my parents, unbeknownst to them, carry this recessive genetic mutation, but no family history, so they're cited and no history known to us, at least. So retinitis pigmentosis starts out often with trouble at night, night blindness. So I was having trouble in dark places. Our doctors were missing it. He wasn't catching it for a while. It is hard to catch in early stages because it starts with very peripheral and the retina can still look normal on exam or normal enough in the early stages. So we had been going to a good eye doctor every year for checkups. So my parents were like, you're fine. And I was getting more clumsy and bumping into things at school. And eventually it led to a near car accident. I was driving by the time I was diagnosed, and I drove onto the wrong side of a highway with cars coming at me, and just by some miracle, wound up on a median almost hitting a tree. And I was just. I remember that day, I was just sobbing. And I thought to myself, if people saw the world the way I did, nobody would drive. It would just be impossible. So at that point, they stepped it up and said, no, we have to see a specialist because this doctor keeps telling us everything's fine. So we did see a specialist and I was diagnosed at 17, at which point they also brought my siblings in.
[00:06:25] Speaker A: So, yeah. Isaac, in your book, your description of that day and all the testing sounded very familiar.
[00:06:32] Speaker B: Oh, sure.
[00:06:33] Speaker A: Your description of what? The dot machine.
That was fantastic.
[00:06:38] Speaker B: The dreaded dot machine, which is one of a, you know, for folks listening, is one of a, you know, few tests or machines, you know, they use to diagnose this type of stuff, these types of site conditions. I was diagnosed before I realized I was having any issues with my sight. Right. So here's my older sister, Daria. At first it seems like she's sort of clumsy and absent minded. Then it starts to seem like, oh, my God, wait a minute, maybe it has something to do with her sight. I was, you know, a 13 year old boy, perfectly content in my own universe, you know, of which I was the center, of course, and everything was perfect, including myself.
And so I was really more miffed. I didn't understand what Darius sight issues had to do with me and why I had to spend the whole day subjected to all these tests or stuff. Of course, now, looking back, obviously they get it, it was genetic, and you want to make sure no one else has it or all that kind of stuff. Anyway, long story shorter, it took a little while for me. It took a little longer for me to be diagnosed, but even at that first visit, they kind of put me in.
Seems like Isaac has it column.
Would like to do some further testing. And then. So here I was at 13 being told that I had this blinding disease when my primal response was like, uh, uh. You know, like, you're like, they're wrong.
And then, you know, denial worked for a little bit, and plowing myself along with my family into the search for the cure worked for a little bit. And then, you know, I had to confront the fact that, yeah, you are losing your sight.
[00:08:25] Speaker A: I was thinking about that, you know, just that difference of finding out and being diagnosed at 17 versus 13.
You have. It's all. I mean, just those four years, it's a very different part of life.
And you're at a different point, I suppose, in terms of how you view sort of your future coming up. Daria, I assume you had your eyes set on college at that point.
[00:08:50] Speaker C: I was diagnosed six weeks before leaving for college, so I got to college at 17, and so I basically had a few weeks to even process my strategy, which was to keep it completely private and lead a double life. That made sense to me at that time. That's what I did in college.
That was fun. But, yeah. So I just kind of left home, you know, a month after the diagnosis.
[00:09:15] Speaker A: Wow.
Sure. So, I mean, that would be. That's very different than 13, where you're not really planning on going anywhere and you probably haven't thought about what's happening beyond in the next couple weeks.
[00:09:27] Speaker B: Yeah. You know, I definitely felt like, with the diagnosis, I think, is when I first became familiar with this sort of sort of pressing notion of sort of time, you know, and sort of the clock ticking kind of thing. I think, as you say, you know, when you're that young, you're often carefree and, you know, your sense of time is like a week is an eternity. Right, right. You know, you meet someone who's 44, which is how open I. Which is how old I am now, you know, and you think, man, 44? That's impossibly old. No, no, one wasn't alive then.
But so, you know, with the diagnosis, I definitely, you know, started to feel like, well, I want to move as quickly as I can to accomplish as much as I can, because I had assumed, like a lot of people, particularly like a lot of sized people, I had wrongly assumed, you know, that blindness was going to ruin my life and mean the end of achievement and independence for me. And so I kind of wanted to get as much in before I started to live this sort of small and sad little life that I just decided in my head was a foregone conclusion.
[00:10:47] Speaker A: Right, right. Well, and being, I guess, a progressive loss of sight. And neither of you knew how long that would take. Right.
So, I mean, what was kind of the timeline for each of you on losing your site?
I don't know if one of you was faster or.
[00:11:07] Speaker C: Yeah, yeah. I think it's common in families where siblings share the same genetic disease, for it to have a different progression because our genes interact with other. Other genes and lifestyle and factors and all that kind of thing affects all of that. So, I mean, for me, it progressed slower than Isaac and my older sister, but it is very tricky because there's no actual rate you can know in your mind. You kind of adjust to certain things, and then a year later, you're readjusting. So it is hard.
[00:11:44] Speaker A: I mean, the mind is good at sort of continuing to try to work with what it's getting, right.
[00:11:50] Speaker C: Yep.
[00:11:51] Speaker B: It's the ultimate prediction machine, the human brain. Yeah, I lost my sight more quickly than my sisters. As Daria mentioned, I always share with people that are often share with people.
It's not my opening line. Hi, nice to meet you. And by the way, losing sight, for me at least, was a lot harder than just being blind precisely because of the sort of emotional negotiating that you wind up doing with yourself and with God, with whatever. And you say, jesus, it would just stay the way it is today.
To your point, Matt, my brain has adapted and I've figured out how to cope with today. It's tomorrow that I'm worried about. And to do that for ten years is exhausting and terrifying.
[00:12:46] Speaker A: Right.
[00:12:46] Speaker B: And are, and certainly unnecessary, which is something obviously, I argue in my book. And, you know, definitely want to leave your listeners with that impression, for sure.
[00:12:58] Speaker A: How did your parents react? I mean, three, three of their four children suddenly diagnosed with this, how would you say they reacted?
[00:13:08] Speaker C: I think they find a solution.
[00:13:13] Speaker B: Why don't you go ahead?
[00:13:16] Speaker C: I mean, I think along the lines of what Isaac was saying, and I didn't mean to cut you off, they really went into this sort of like, you're not going to be blind. We're going to find a cure. We just have to meet the right scientist and raise enough funds. And so we kind of went into this action mode. I was very, very private when I was younger, so we were kind of thrust into this public in our community, our beloved cuban jewish community in Miami. We were thrust into this, you know, coming out in the Miami Herald and look at this family and the three kids going blind, and let's raise money and help them find a cure, which, I mean, I think it's great to fundraise for science, but I think at that time, at least when we were young, in the early years, there wasn't a lot of room for contemplating what life would be like and how it was doable as blind people. It was more like a race to find the hero that was going to help us. Right. Aize, you want to take it from there?
[00:14:22] Speaker B: Yeah. No, just exactly what you said.
For me, especially having been diagnosed in advance of any symptoms. And then next thing you know, my parents just were determined, as Darius said, to solve this problem for their children, which is very natural and frankly, very lotable reaction. But, you know, so I spent, you know, a while really trying to help that effort with my folks and with the amazing community that enveloped us with support, like, like I mentioned. And, you know, that was all fine and good to tell you. So, you know, I'm gonna. This is a race against blindness, and you know, it's a race I'm gonna win, and I'm not gonna have to confront, you know, all these awful things that I've told myself, you know, are necessary consequences of blindness. And then, you know, before I knew it, you know, blindness, it was. Any sober assessment of the situation would say blindness was way out in front of the scientists. And, you know, while the supporting research was great, I really had not done a damn thing to learn about going blind or being blind, uh, uh. Or, you know, what I would actually do to cope with the day to day and the very, you know, specific, tangible, uh, challenges, you know, that we face. And so there really was a sort of pivot, pivot moment when I kind of said, you know what? I think I'm going to cool out a little bit on this, uh, finding a cure and sort of trying to be out front, uh, raising money and awareness, and I'm going to instead kind of turn inward with my then girlfriend or fiance now, of course, wife of more than 20 years, and we're gonna. We're gonna, you know, figure out how to make, you know, how to make the small, practical.
How to implement the small, practical solutions that will make life, you know, livable and enjoyable.
[00:16:21] Speaker A: Yeah, no, I thought you had a really interesting line in your book where you say that you confused work working for a cure with fighting your fears.
Yeah, it's very interesting.
[00:16:32] Speaker B: Yeah, thanks. That is a good line.
[00:16:36] Speaker C: That's a great line. And Isaac and I also discussed, we had to sort of, at least for me, stop viewing blindness as a villain. You know, accept it as just a part of who we were. So that was a huge shift, too. Like, in our mind, it was the villain and the cure was the hero, you know, and not a villain. It's just a part of who we are that leads to a lot of great qualities and resilience and all that.
[00:17:07] Speaker A: Was there something because, of course, you're losing eyesight over time. Was there something just so specific about the idea of just losing, like, total blindness? It sounds like that was kind of a line maybe separate from. Is that just because at any point, you figured, I've got something to work with.
[00:17:29] Speaker B: For me? Yes.
Although that's, you know, that's something sort of. It's so hard to explain this to certain folks or folks who haven't had a similar experience, but that's. That's something that you have left, at least with a condition like retinitis pigmentosa, where you're sort of basically, you know, basically loot, randomly losing photoreceptor cells at the back of your eye, and it's producing this bizarre, you know, reality, a visual reality in which objects appear or morph or disappear. And you can't figure. It gets to a point where, for me, it was kind of like a relief a little bit to say, you know what? Screw it. Like this. This isn't.
This isn't great. I mean, this. It's harder to try to struggle to piece together my life with, you know, with the little bit I got left here, as fickle as it is, and, like, you know, screw it. I'm gonna go. I'm gonna jump to the other side and go, hey, I want to learn to live a blessed life, right, as a blind man.
And any glimpses or shards of sight that I might get, you know, here or there, those are. Those are extra. Those are a bonus. Those are, you know, a blessing.
And then eventually, at least, you know, in the types of conditions we're talking about here, you know, you don't, you lose that, too. And then you're just totally blind, you know? For me, the turning point was when my again, now wife's mother, who is coincidentally my mother in law, came. Came up to. Was coming up to Boston to visit Dorothy and me, and she was the director of occupational therapy at a spinal cord center, one of the leading spinal cord centers and injury centers in the world. So she had seen a lot of, you know, folks come, you know, come in. Yesterday, they were perfectly, quote unquote, fine, and today they're quadriplegic. And, you know, Brenda shows up and helps them figure out how to make the rest of their life work. So she, you know, she started to realize that Dorothy was unable to shake me off and that I might be around for a little while.
She set out to learn more about it for herself, and she found the vision rehabilitation specialist in Boston. So she was coming up to visit Dorothy, and she said, hey, Dorothy, you want to come with me to see this vision rehabilitation specialist? We can learn more about what's going on, you know, with Isaac and how you can help him. Well, I was the last to know about this. And, I mean, I remember literally being like, oh, my God, my, you know, again, then girlfriend and her mom are gonna go meet a vision rehabilitation specialist to learn about ways like, I can have a, you know, safer, more fulfilling, you know, easier life.
Maybe I should go along, too.
It was the weirdest thing. I literally, like, asked. I was like, hey, Dorothy, do you think your mom would mind if I came, too? I think my mom would think it was a pretty damn good idea, you know?
[00:20:28] Speaker A: Right.
[00:20:29] Speaker B: So that was really a major turning point for me because when I, of course, when I went to go meet with that, you know, said vision rehabilitation specialist, you know, there was just a, you know, a panorama of tools and options and technologies, all sorts of things that I had assumed I would, you know, lose forever. Of course, you know, those foolishness. I had been terrified about losing the ability to interact with my computer, you know, and just hadn't done anything. I couldn't be bothered to learn anything about what that looks like. But this vision rehabilitation specialist, of course, taught me about, you know, screen reading software and just a million other things. And that was a big day for me, I remember. And that was kind of again where I said, look, maybe now I want to live my life focused, you know, instead of maybe 80% on cures, maybe it's, you know, ten or 15, and the rest is going to be focusing on day to day, just living my life.
[00:21:21] Speaker A: Yeah, it's interesting. The saddest thing I've ever, I had a friend years ago who his parents were sort of stopping him from learning various skills. At the time, he was probably in a good spot to learn braille and some other things, and they had this perception that it would make him appear more blind to the other students in his class. And it was one of those things where it's just that these skills are so important and you become so much more independent that that outweighs any perception of you, you know, being blind or less in that regard. So taking, no doubt, these skills plus.
[00:21:58] Speaker B: What, what's the message you're sending there is that it's, wow, somehow bad to be blind and you don't want people to think you're blind.
[00:22:05] Speaker A: Right, right.
[00:22:06] Speaker B: Which is a particularly tough message to swallow if you're going blind.
[00:22:10] Speaker A: Yeah, exactly, exactly. So for sure.
[00:22:16] Speaker B: Yeah.
[00:22:19] Speaker C: I still have some central eyesight. So Isaac's been like, kind of a guide for me, even though he's younger in terms of always, like, taking the next step. So that's been so, such a gift for me, you know, really, really helpful. I just wanted to mention that. Sure, absolutely.
[00:22:35] Speaker B: Oh, that's kind. Well, my bag of tricks is empty, or you're already familiar with that.
[00:22:40] Speaker C: No, it's not.
You have a million tricks left. My bet's on you for sure. So.
[00:22:49] Speaker A: Yeah, I mean, I know for myself, you know, I diagnosed at three. I don't have any memories of a point where I could actually trust my vision.
The strangest thing for me was I lost motion vision last.
So I grew up having just enough vision to use shadows from trees to drive atv's around our cabin property.
And, you know, would be doing that and could actually do that longer than I could read really large print because I was moving at the, you know, as I drove.
So that was, wow, the strangest thing for me.
And the fun thing was, of course, you know, people would come out and think it was so dangerous to let their kid drive. And my parents would point out, you know, our son's on the front one and he's blind, so it's probably okay.
Yeah, exactly.
For me with that and why I titled this project and the podcast defending vision is, my experience was more being blind for most of the time that people knew me as a kid, and certainly teachers, my experience was really people, I would have a goal because I didn't know different. So I figured, okay, I want to achieve x, y, or z. I want to be good at math or something like that. And I'd have a teacher say, well, you're never gonna have a job that requires math, so there's no point in you learning it.
And so I had sort of that experience. I never, I guess, had a.
I just kind of assumed, well, these are goals people want to achieve, and I want to achieve them. And so I kind of had to play the defensive role of, you tell me I can't. Well, I'm going to double down now and find a way to do it and maybe prove you wrong.
So I was kind of struck, Isaac, in your, in your TED talk, you mentioned that blindness gave you vision in that sense. And so you went through a very, both of you went through a very different experience in, you had a plan for your future and then had this come along. And at least, if nothing else, I guess, make you pivot, right?
[00:25:07] Speaker B: Sure, dar, why don't you take it?
[00:25:12] Speaker C: Yeah, I mean, it is interesting because we were diagnosed at ages where you feel invincible, you know, we were talking about.
But at 17, I didn't have such a definitive plan. You know, I was heading to college and.
But I agree. I mean, there's so many gifts that have come from it. If I could go back in time and be out of the closet in college, for example, and not completely terrified for years, but you kind of have to go through it to get to the other side, I guess.
And I think in a way, it helped me not sweat the little stuff in college or beyond. You kind of really knows what matters, and you feel grateful for the things you have.
[00:26:02] Speaker A: So it'll teach perspective very quickly.
[00:26:06] Speaker C: Absolutely. No doubt. And that's just like a priceless thing to come from it, you know?
[00:26:12] Speaker A: Right, right.
[00:26:14] Speaker B: No doubt. And that's exactly, you know, the kind of thing that I have in mind. Darwin, you know, I talked about how sight is different from vision and, you know, I lost my sight, but I gained vision in the process.
I'm going blind.
[00:26:32] Speaker C: It's also just, you'll be proud of me. I always say now that I'm losing my sight, I don't say I'm losing my vision anymore.
[00:26:39] Speaker B: Yeah, that's my only.
[00:26:40] Speaker C: You were a stickler for that. No, for sure.
[00:26:42] Speaker B: Yeah, that's my little pet campaign.
I don't like it when people start to confuse vision for sight because, you know, vision, of course, means a lot more.
And in fact, losing sight, I think, amplifies vision. Or being blind gives you different sorts of vision.
[00:27:01] Speaker A: Sure.
[00:27:06] Speaker B: But, yeah, certainly in terms of plans and stuff, I was a childhood actor and I was out in LA and I thought I had all the time in the world to just kind of give, give LA an acting its best shot or whatever. And then, you know, by the time that, you know, by the time I was 13, 1415 years old, and I sort of did make it out to LA, not only had I been diagnosed, but I was losing sight more rapidly than I think anyone expected, certainly more rapidly than I had hoped.
And at that point, there was a real quick pivot. Again, like we were talking about earlier, Matt, you know, this sense of time is against you. And so I just said, you know, this acting thing's not going to be for me long term for a bunch of reasons. And, you know, by the way, I really want to get to college as quickly as I can. So I actually started college a couple weeks after I turned 16.
[00:28:15] Speaker A: Overachiever.
[00:28:17] Speaker C: Yeah.
[00:28:17] Speaker B: You know, if I had to do over again or if I were, you know, counseling one of my children, I don't necessarily think it's the greatest move.
But again, at the time I would have said, you know, it was the only move. So.
[00:28:35] Speaker A: If you would like to learn more, go to defendingvision.com. and if you enjoyed the show, rate, review and subscribe on Apple Podcasts, Google, Spotify, or wherever you find your podcasts. Thanks for listening.
