Show notes
[MUSIC PLAYING] - You're listening to "That Real Blind Tech Show" with Brian and Ed. BRIAN FISCHLER: I have a name for my chronic pain. It's called Ed. REBECCA ALEXANDER: I wanted to say first we've met in New York. ED PLUMACHER: I've read your book. I found it to be brutally honest and very straightforward. REBECCA ALEXANDER: I think that the most important thing that I can tell people is that you want to find a therapist who specializes in grief and loss. ED PLUMACHER: Hey Brian before we move on, I just have one question. I'd like to have your definition of inspiration porn? REBECCA ALEXANDER: Oh my God. Ed, you are a doll to take this. Oh, man. I just-- I am just tickled. I wish I had popcorn here BRIAN FISCHLER: I don't wake up anymore and think of myself as a blind person. It's just life. It's what it is. - Here is Brian and Ed. [APPLAUSE] BRIAN FISCHLER: Welcome back to another "That Real Blind Tech Show." With me today as always or almost as always is my partner in crime, Ed Plumacher. How are you doing today, Ed? ED PLUMACHER: I'm doing well there, Brian. How are you today? BRIAN FISCHLER: I am fantastic 'cause the weather is getting ready to turn. And you know, if there's one thing I like it's cold weather and everything. I'm one of those freaks. - You guys are freaks. BRIAN FISCHLER: That likes it cold and everything. ED PLUMACHER: Yeah. From a boy-- a boy from Florida loves a cold. That's interesting. BRIAN FISCHLER: Hey, born in New York. It wasn't my fault. My parents dragged me kicking and screaming to Florida at four years old and everything. But I've been back in New York since 2000 though. So it's been a pretty long time. ED PLUMACHER: Yeah, but you're still a Gator at heart. BRIAN FISCHLER: When it comes to football. That's about at football, Florida Gators fan. That's right we got-- we got a game tonight and everything. But we're not here to talk football today because joining us today is a friend of mine who has Usher syndrome. But she's much more than that. She's a best selling author. She's an extreme athlete. She's also a psychotherapist. And if you listen to this show you know two things. I'm definitely a psycho who's in need of therapy. How are you doing today Rebecca Alexander? [LAUGHTER] REBECCA ALEXANDER: I knew there was something like that coming. I was just waiting to figure out what it was going to be. And, of course, I couldn't have predicted it. I'm doing well and I'm very happy to be joining you guys today. So Thanks for having me. ED PLUMACHER: Well, thanks for joining us, Rebecca. It's great to meet you. REBECCA ALEXANDER: He is well. BRIAN FISCHLER: So Rebecca, let's start at the beginning. It's like, welcome to your life on "That Real Blind Tech Show." Take us back to when you were first diagnosed with a vision loss. REBECCA ALEXANDER: Right. All right. So yeah. So I was diagnosed actually with retinitis pigmentosa, RP with the age of 12. I had difficulty seeing the blackboard at school. I was in the sixth grade. I told my dad. He took me to an optometrist. The optometrist said there was something in the back of my eye that his equipment wasn't sophisticated enough to identify what it was. So he sent us to an ophthalmologist. I was born and raised in the San Francisco Bay Area. So we went to UCSF and, you know, they did all of the different tests that they did. I guess this was in the early '90s. And you know, the contacts with the wires coming out of them, the Goldman. BRIAN FISCHLER: Mh-hmm. REBECCA ALEXANDER: You know, field of vision that we all know and love. And you know, for me at the time, I was just like, Oh, Jesus. All of this to get glasses. But-- so they, you know, told my parents that I had RP. We decided, I guess, to get a second opinion. We Went to Stanford and came up with the same information. So, you know, I was 12 years old. I don't know how you tell a 12-year-old that they're going blind when for all intents and purposes, at the time I could see relatively well. I grew up with dogs, so I tripped over them constantly. You know, there were various things I had difficulty seeing at night. All of the usual symptoms you would expect. But I was also scared of the dark. So maybe I thought that, you know, it was just me being scared of the dark. And yeah. So that was my original diagnosis with RP. And so when we started getting involved, you know, with the Foundation Fighting Blindness and everything. At the time, we only knew that I had RP, that I had retinitis pigmentosa. I was told at a young age that I had what was called a cookie-bite of hearing loss. And they thought that it was from having frequent ear infections. There was not a connection made really between the two. I used to watch TV out of the side of my left eye. And you know, what we came to deduct over time was that my left ear was always my stronger ear. So I think it was sort of this superimposed wave that I created to adapt to my hearing loss by, you know, cocking my ear, or my left ear, or my better ear forward to watch TV. BRIAN FISCHLER: You know, it's funny Rebecca, you mentioned that afraid of the dark thing, and it reminds me when I was a kid. You know, what movie scared the bejesus out of me? REBECCA ALEXANDER: Can't wait. BRIAN FISCHLER: "ET." - Elliott. - What? - Elliott. REBECCA ALEXANDER: Oh, yeah. So scary. BRIAN FISCHLER: And my mom said to me like 10 years ago, she said, "Brian, do you think that you were afraid of "ET" because you had a vision loss problem?" And I said, no mom I think I was just a giant freaking pussy. [LAUGHTER] REBECCA ALEXANDER: Yeah. That day, you too was scary. And when the whole scene with him with the stuffed animals. Ay-yi-yi. BRIAN FISCHLER: That glow in the dark finger freaked me out. Elliot. REBECCA ALEXANDER: Oh, no. Hold on it. BRIAN FISCHLER: Elliot. Yeah. I believe it freaked me out, man. [LAUGHTER] REBECCA ALEXANDER: Toddler of young age, I went to like, a friend's house, and her mom just did not supervise us, and I think we had "Freddy The 13th" on. And I must have been in like, the second grade. So needless to say, I slept in my twin brother's room for good. I don't know when did I stop sleeping in this room. Like, a year ago. [LAUGHTER] Now-- but I always slept in his room for a good four years or so. Because I was just absolutely scared shitless. BRIAN FISCHLER: Yeah. This movies will do that to you and everything. REBECCA ALEXANDER: Yeah. ED PLUMACHER: Aside from, you know, being diagnosed with retinitis pigmentosa, later on, I guess, usher syndrome, reading your book, I read about this your devastating accident which had a major impact on your life as well. Can you tell us a little bit about that? REBECCA ALEXANDER: Yeah. You know, it's interesting because I wrote a memoir as you know. And thank you for reading it. And I know that generally, I assume that it usually ends up in people's bathroom as wonderful toilet reading. So I appreciate your taking the time. But what people oftentimes don't know is they think, Oh, yeah, here's a woman who wrote a story about-- her about her life living with a condition that causes death blindness. But a huge part of my life and to this day was impacted by this very serious accident I was in at the age of 18. I went out with some friends after, I guess, we were maybe celebrating graduation from high school or 18. We stopped at a school playground, and just pounded alcohol, and made it to some nightclub for 18. And you know, I don't know whatever it was we made it there. I was OK to get in and soon after was too drunk. And so we had to go home. And my friends brought me home and put me into bed. And, of course, I don't remember any of this. But at some point, I got up to go to the bathroom, presumably at about maybe four or something in the morning. And I was still so, you know, delirious and intoxicated that instead of going from my bedroom door I went from my bedroom window. BRIAN FISCHLER: Oh my God. REBECCA ALEXANDER: And I fell out and onto our-- yeah, flagstone patio. I fell about 27 and 1/2 feet. So it's about almost three storeys. And I broke just about everything in my body. And I was supposed to be going to college in the fall. But, of course, those plans were pushed off. And I had just about every part of my body casted. Shattered my left foot, shattered my left hand, broke my right hand, broke my back. And the only thing that wasn't casted or broken was my right foot or my right leg. And so after, you know, many surgeries and bone graft from my hip to rebuild my foot, I was only allowed to leave the hospital when I was able to get myself out of a hospital bed into a wheelchair and out of the building in the event of a fire. That's how they determine whether you're ready to go home. But the problem was the only thing I could use was my right leg. So I spent a lot of time, you know, in the hospital just figuring out how to get myself out of the hospital bed using just my right leg. And so I was home and recovered for a long time. And I still look back at that time as probably the point of really where I developed resilience and strength, not knowing that I would need as my diagnosis would be realized a little bit later on. Yeah. BRIAN FISCHLER: That's incredible. I can't imagine the state of mind you must have been in while all that was going on. What was that like? Do you recall what it was like? I mean, was it just depression, mass depression or-- REBECCA ALEXANDER: You know, it's interesting because I was in-- so there is a combination of things, right? I mean, it forced my life to absolutely slow down. Everybody, including my twin brother who does not have RP or usher syndrome, they were going off to college. You know, my high school boyfriend, everybody was leaving. And it wasn't, like, I was staying home and I had some cool internship or that I was working. I was literally relegated to a bed and a wheelchair. I had visiting nurses that came to bathe me. And they couldn't bathe me in a shower or even a tub because I had so many casts. So I literally sat on a closed toilet seat with a visiting nurse in my birthday suit with-- BRIAN FISCHLER: Hmm. REBECCA ALEXANDER: You know, a washcloth and soap. And we would just pass it back and forth. And-- and so it was an incredibly humbling experience, to say the least. You know, I had like, a calendar and I would cross off each day. And the one thing I look forward to were those doctors appointments or the physical therapy appointments that I had to put my body back together again, one bone at a time. And it was incredibly painful physically. But I think the drive and the motivation I found then was just to feel like I was going to be human again. So yeah. It's a good question. I mean, you know, one of the biggest things that I contend with now is, yes, the vision and the hearing loss. But like many of us, I live with chronic pain. And I've lived with chronic pain for the last 20 something years since that accident. And that's another piece of life that I think we don't often hear people talk about. BRIAN FISCHLER: I have a name for my chronic pain. It's called Ed. [LAUGHTER] ED PLUMACHER: There you go. Heard it. REBECCA ALEXANDER: Oh, man. ED PLUMACHER: When I read about your rehabilitation, the one thing I did come across with Rebecca is that you were able to get through that because you just had this incredible determination and-- and an awful lot of grit. Just reading that story was one of the most incredible things I've read about someone overcoming a tragic accident like that. REBECCA ALEXANDER: Yeah. You know, I will tell you that the simplicity that you have to minimize your life to and how chaotic our lives have become, we create problems for ourselves, we create drama. I mean, to me, as wonderful social media is-- and this is how, you know, this podcast is likely going to be disseminated and get out there, it also can be sort of the bane of our existence. You know, and where people really sort of, create so much more than they knew to. - Hi. This isn't real. You know what it is? It's St. Elmo's Fire. Electric flashes of light that appear in dark skies out of nowhere. [GASPING FOR BREATH] [BANGS] [CRIES] Sailors would guide entire journeys by it. But the joke was on them, there was no fire. There wasn't even a St. Elmo. They made it up. They made it up because they thought they needed it to keep them going and things got tough. REBECCA ALEXANDER: For themselves. So needless to say, it was an incredibly trying time. But I was told by doctors, you know, at 18 that I was never going to walk properly again. That I was never going to be able to do a lot of things. And I could either accept that or I could say, you know what? Let's see. Let's see what I'll be able to do. And I think that. What's interesting is, you know, as I was growing up before they knew what my diagnosis was-- and I should mention as many of us have experienced, it wasn't just my diagnosis with RP, my parents were getting divorced at the same time. - We're dealing with a lot of shit. REBECCA ALEXANDER: And that really did a number on me, you know. So it's like, my parents told us they were getting divorced. It was a very difficult divorce and experience. And then I get this diagnosis. And it's not I never felt like I was the reason why my parents got divorced. I know that, that sometimes is a misconception. But I did feel like there was just a lot going on. And so I think that when all of this was happening before I got my official diagnosis. I was in the fourth grade when they separated and soon later divorced. I think that the teachers told my parents that I was going to be a cheerleader, that I had my head in the clouds, you know. They didn't know about my hearing loss and vision loss so much. And those were the messages I received. And my brother, my twin brother was just like, killing it. You know, I was such a great athlete. And I was a good athlete, but I wasn't like you know the star of the team or anything. I mention this because it's amazing. How I think that having all of these messages that I received early on, how I came to use them and be like, yeah, no, I think I'm going to be the one to determine what my life is going to look like and what I'm going to be able to accomplish. And I think that when I got, you know, this information from the doctor that I wasn't going to be able to walk properly again, I will always have a little bit of a limp with my left foot-- But you know, I've climbed Mount Kilimanjaro, I've swam from Alcatraz to shore. There's a lot of things that I've done since that accident that I was told I would never be able to do. So there's sort of, interesting parallels between the two. BRIAN FISCHLER: That's awesome. Now this next question it's kind of, I guess, a two-parter now. You've always been very athletic, I guess. One, what do you like most about competing? And two, do you think your drive for competing is what helped you get through everything you were going through? REBECCA ALEXANDER: Yeah. You know it's interesting. I think so. I grew up with brothers. Right. So I was always like the designated referee for whatever we were was playing. Which was basically like, you know, just sit on the sideline, we don't really need you, but we'll let you play. And I think that I felt to a certain extent, like, in order to keep up. I kind of, had to, you know, really-- I mean, try to be a good athlete. I wanted to e…
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