Episode 1464 - Andrew Leland
Guest:Lock the gates!
Marc:All right, let's do this.
Marc:How are you, what the fuckers?
Marc:What the fuck buddies?
Marc:What the fuckeristas?
Marc:What's happening?
Marc:I'm Mark Maron, and this is my podcast, WTF.
Marc:Welcome to it.
Marc:I know many of you have been here a while, and I definitely appreciate it.
Marc:So listen, I talked to...
Marc:a guy named Andrew Leland today.
Marc:Now, Andrew Leland, he was a writer, an editor, a lecturer, and I met him before many years ago.
Marc:I did a panel.
Marc:It was a lit quake panel with him back in 2010 for The Believer, where he's been a writer since 2003.
Marc:And
Marc:So what happened is I was at Superiority Burger in New York the last time I was there having a nice time.
Marc:And he's walking or he's being walked by a guy.
Marc:And I just hear someone behind me go, hey, there's Marc Maron.
Marc:I turn around and there's a guy standing there who I don't know.
Marc:And there's another guy standing there I don't know.
Marc:But he's got a blind stick.
Marc:I don't know what you call those.
Marc:And he's looking right at me and he goes, Marc Maron, do you remember me?
Marc:We did a panel together in San Francisco and I kind of remembered him, but he wasn't blind then.
Marc:And, you know, he reintroduced himself as, you know, Andrew Leland.
Marc:And I was trying to put things together, but I still couldn't figure it out.
Marc:How would I not remember a blind guy?
Marc:And it turns out he wasn't blind yet.
Marc:He had this degenerative disease that progressively made him blind.
Marc:And now he's blind.
Marc:And he's written a book about it.
Marc:And it's called The Country of the Blind, a memoir at the end of sight.
Marc:He gave me a copy of it.
Marc:And I thought, well, I got to take a look at this.
Marc:And I invited him on the spot.
Marc:He said, are you coming to Los Angeles?
Marc:Maybe you could come on the show.
Marc:And he was planning a trip out here and he came on the show.
Marc:And this was the conversation of us catching up and talking about the sort of journey through and to blindness.
Marc:You know, gratitude...
Marc:is not something that necessarily comes easy for me because it's not that I'm ungrateful.
Marc:I just don't pay attention to gratitude as much as I should for my health and for the people in my life and for not dying one way or the other by accident.
Marc:And it's just because I think I'm in such a place of hyper kind of panic and my brain's always on fire.
Marc:So and I've talked about this before is I don't I don't really know exactly what happiness looks like.
Marc:And I'm not sure.
Marc:I think gratitude is more active than happiness, quote unquote.
Marc:But I'm usually looking for a certain amount of relief.
Marc:But that's that's sort of a cheat, isn't it?
Marc:So, you know, it was it was touching to talk to this guy because this is a guy that's known he was going blind for a long time and it happened gradually.
Marc:But, you know, he is approaching his life and making the adaptations necessary, making decisions around it and understanding a world and a life that he he'd never anticipated.
Marc:Well, he did, actually, but I'm not sure he anticipated it as actively and now is sort of adjusting and embracing it.
Marc:And that to me is a profound amount of strength.
Marc:You know, you don't know how you're going to be challenged in this life, but we all will be, whether it's with your own problems or with the problems of people you love.
Marc:And you don't know what that's going to do to you.
Marc:You know, obviously, like during COVID, we were all challenged.
Marc:And now, you know, with the world as it is, we're all challenged.
Marc:And what do we do?
Marc:What do we do?
Marc:Do we think what we're doing is enough?
Marc:I don't fucking know, man.
Marc:All I know is I'm trying to do some new jokes and I'd like to think I'm on the pulse of something other than just myself.
Marc:But I don't know that that's true.
Marc:Listen, I'm at Largo in Los Angeles on Wednesday, September 6th.
Marc:I'll be doing five shows at Helium in St.
Marc:Louis, September 14th through 16th.
Marc:Then I'll be in Las Vegas at the Wise Guys in the Arts District on September 22nd and 23rd for four shows.
Marc:And in October, I'm at Helium in Portland.
Marc:That's Portland, Oregon, on October 20th through 22nd for five shows.
Marc:Some of them are already sold out.
Marc:There are forthcoming dates in Denver.
Marc:And in Albuquerque, I'm doing a night in Albuquerque.
Marc:Those tickets aren't on sale yet.
Marc:I'll be at the chemo in November.
Marc:So heads up.
Marc:I'll let you know when those go on sale.
Marc:So look.
Marc:I've been reading the new book that is forthcoming by Naomi Klein, who is a brilliant, progressive scholar.
Marc:And I've read parts of The Shock Doctrine.
Marc:I've read parts of No Logo.
Marc:But I've always been overwhelmingly impressed with her.
Marc:So she's got this new book and I want to know it.
Marc:because I'm going to talk to her.
Marc:I want to know it.
Marc:And I think it's her most personal book.
Marc:It's really leveling.
Marc:Between the last couple books I've read, which are both nonfiction, Jeff Charlotte, who you'll hear on this show.
Marc:I believe that book's called Undertow, Scenes from a Slow Civil War.
Marc:And Naomi's book, Doppelganger, A Trip into the Mirror World.
Marc:It is thorough, it is personal, and it really talks...
Marc:About, you know, both of them talk about what is happening.
Marc:Jeff Charlotte's book Undertow specifically about fascism and propaganda and and the very real threat of it.
Marc:And Naomi Klein also speaks of that, but she ties together a lot of things that I've been thinking and couldn't quite connect, like the wellness industry and how that has sort of been turned out by fascistic thought.
Marc:She goes into the history of...
Marc:You know, genocides.
Marc:She talks about specifically the whole book is a and I'll talk about it more in the future.
Marc:But the portal to the book is is her obsession with being mistaken for Naomi Wolf online, mostly, and then sort of chasing that into what she calls the mirror world, which is the bubble reality of fascist propaganda, the fascist movement, conspiracy theories and and sort of.
Marc:creates a metaphor for that world.
Marc:And then through that, we get the history of capitalism and where we're at with that and all this sort of energy that is misdirected into what is a festering fascist movement and into a very real and obvious movement.
Marc:And happening climate crisis.
Marc:It's not without humor and without personality and without, you know, her emotional and personal investment in the story, but it just sort of really kind of rang some bells for me.
Marc:What am I talking about on stage?
Marc:What am I really doing?
Marc:You know, what am I representing up there by deciding to talk about, you know, trauma and as opposed to really.
Marc:And, you know, look, I address fascism.
Marc:I address anti-Semitism.
Marc:I address climate.
Marc:I have for the last two specials.
Marc:I seem to always have it there.
Marc:But somehow.
Marc:You know, she gave me a window into what is the fundamental problem at the core of erasing a country's history on purpose and what that means.
Marc:Like when you talk about book banning and about being against critical race theory or this idea of bodily purity and anti-vaxxing.
Marc:And she sort of contextualizes it historically and really connects it all.
Marc:to the effects and disastrous catastrophe of late-stage capitalism.
Marc:And that is sort of the last part of the book.
Marc:And I don't know if I'm educated properly or really keep that in mind, because in order to keep that in mind, just how much death and pain...
Marc:And the sweat of the enslaved that you eat and wear on your body and use every day is it's dark and overwhelming.
Marc:But it is true, man.
Marc:So how do you go through life avoiding that, you know, with the sort of ideas like, well, I do the best that I can and, you know, I'm aware.
Marc:You know, what good is awareness?
Marc:So, like, you know, what good is awareness?
Marc:So, you know, I'm carrying a lot of that with me and a lot of my own personal struggles in terms of psychologically what I'm sort of going through now and also trying to, you know, create.
Marc:But in reading it and in reading about sort of the repercussions of the settling of Europe and North America and manifest destiny and genocide and, you know, how, you know, Christian culture primarily and capitalism is sought to really sort of bury the reality of that and make it and diminish it.
Marc:And she really talks about that you can't do that for very long because it will start coming out.
Marc:It will all start coming out.
Marc:She talks about the, I think they're called the Shadowlands of sort of the dark side of the results of historical plunder.
Marc:And I realized that I'm catching up with reservation dogs and I'm realizing this is the voice of the Shadowland.
Marc:This is the beautiful, emotionally deep, truly authentic voice of a people that was nearly eradicated.
Marc:And I'm really kind of looking at that with new eyes and watching these shows.
Marc:And I texted Sterling.
Marc:And I really think that Reservation Dogs is probably the most important TV show and work of film art in the last few decades, in my memory.
Marc:That and Underground Railroad.
Marc:Also a voice.
Marc:of art from the Shadowlands.
Marc:You know, you hang your hope on these things.
Marc:I mean, I am moved by it because I'm sort of attaching it to all this new knowledge that I have.
Marc:And it's easy to watch it as a surfacing and as a cute show and an emotional show, but the nature, at the core of Reservation Dogs is the survival of a people that was intentionally attempted
Marc:There was an intentional, there was an intent on behalf of colonizers to eradicate them from the world.
Marc:And that darkness is at the core of the hope and the emotions and the stories of that small but beautiful television show.
Marc:And now it's even ringing deeper with me now.
Marc:And the fact that in recent weeks, you know, all I've had to hang my hope, and there's nothing to hang my hope on in the face of climate crisis, but in the face of fascism, it's interesting to me that over the last month, you know, outside of, you know,
Marc:Trump's indictments or whatever.
Marc:I don't know how many barrels that shark can swim with, but he's always surprising and it doesn't seem like justice is ever really forthcoming.
Marc:And in terms of the general sort of shameless fascism and hijacking of symbols and language of the left and just anti-Semitism and shop owners being killed for displaying rainbow flags in America.
Marc:You know, that's that's an act of domestic terrorism, but it is a point of view that is being championed by almost an entire political party shamelessly.
Marc:And that's what happens.
Marc:That's how it all starts.
Marc:But it's fascinating to me that in light of all this, that the only two things that have given me any sort of uplift or sense of hope and desire to sort of stay on it are the Barbie movie and Reservation Dogs.
Marc:It's wild.
Marc:There's a joy to the spirit of them, but there's also a profound courage to them and something deeply resonant and educational if you really sort of chase down where these things come from.
Marc:But thank you, Greta.
Marc:Thank you, Sterling.
Marc:It's exciting.
Marc:Okay, so now let's talk to Andrew Leland about...
Marc:You know, moving through Becoming Blind.
Marc:The Country of the Blind, a memoir at the end of sight, is available now wherever you get books.
Marc:And this is a conversation I had with Andrew Leland.
Marc:I'm glad I ran into him.
Marc:How long have you been in town?
Guest:Since Friday.
Guest:And you saw David Chang?
Guest:How'd that happen?
Guest:So I used to work at McSweeney's.
Guest:Right.
Guest:And when I was there, Lucky Peach started.
Guest:Oh, yeah, yeah.
Guest:And McSweeney's published that magazine with David Chang.
Guest:What was there, like eight issues or something?
Guest:Maybe some.
Guest:I think there was a little more than that.
Guest:Really?
Guest:Yeah, they left McSweeney's after a while and went off on their own.
Guest:I kind of liked it.
Guest:It was a pretty magazine.
Guest:You wrote for it.
Guest:I was reminded of that.
Guest:You did a thing about cast iron pans.
Guest:Cast iron pans.
Guest:Right.
Guest:Which I never followed your advice, but I always feel guilty now when I've got my weird rusty cast iron pan that I should do the Marin thing, but I don't.
Marc:You know what?
Marc:It's like one of those things, not unlike many things that I did not commit to.
Marc:It's not a lifelong passion.
Marc:Oh, it makes me feel better.
Marc:No, man.
Marc:It's like I get caught up in shit, and then I'm all in for a few, and then I season the pans, or I do the jeans a certain way, or I buy all the albums of one artist, and then a month or two later, I'm like, yeah, it's behind me.
Marc:You're making me happy.
Marc:Yeah.
Marc:I'm right there with you.
Marc:I'm a classic, compulsive, slightly manic person that finds over time that all these little exciting things that I get totally obsessed with do not change my emotional or psychological bottom line.
Marc:But you expect every time you expect them to.
Marc:This is the one.
Marc:This is the thing.
Marc:I don't know if I put that much weight in it, but I like being that engaged.
Marc:And I do think that, you know, I will stick with it.
Marc:Well, I know that stuff about cast iron, and if I need to re-season one, I will.
Marc:But there is something about, I don't know, man.
Marc:Every time I do anything like that, it always seems like right at the same time everyone else is doing it.
Guest:Yeah.
Guest:It's kind of like seasons of television or podcasting.
Guest:You're like, it doesn't need to be like cheers.
Guest:It doesn't need to be on for 20.
Guest:You don't need to be Mr. Cast Iron for 30 years.
Guest:No, I don't need to be the go-to guy.
Guest:Let it be.
Guest:Let it have a good run and then let it go.
Marc:So when I ran into you, I was at the Superiority Burger and you came up to me or I think the guy that was Jordan Bass.
Marc:Yeah.
Marc:He was walking with you, and he's like, Marc Maron.
Marc:And you're like, hey.
Marc:And then I didn't put it together for a second that you had the stick.
Marc:And I was talking to you, and you were looking right at me, and I'm like, what's going on?
Guest:Yeah, yeah.
Guest:Is this for real?
Guest:You thought I was a faker.
Guest:It was like a jackass thing.
Marc:No, it's weird.
Marc:I didn't initially think he was a faker, but I knew that you were a guy that could see because you hosted a panel that I was on and I tried to put that together when that happened and what I thought of you then.
Marc:Oh, wow.
Guest:Yeah, there was a lot going on in that moment.
Guest:I thought you were being extremely polite and that you didn't totally believe that I had moderated the panel and you were just like, okay, some weird dudes are accosting me and interrupting my superiority burger.
Guest:I'm going to be nice so that they leave soon.
Marc:And then you did a book event there.
Guest:Is that what it was?
Guest:In the back?
Guest:My friend Jordan, who also was part of the Dave Chang universe until recently, booked the back room there.
Guest:And yeah, we had like a dozen people celebrating the publication.
Marc:That's nice.
Marc:And then you're like, oh, do you have a book?
Marc:And you didn't.
Marc:And I said, you should do the podcast.
Marc:You're like, I'm going to be in L.A.
Marc:this week.
Marc:I'm like, let's do it.
Marc:And then you left.
Marc:It was unbelievable.
Marc:And then you came back in and said, I stole my wife's book.
Marc:It's the only copy she has or something.
Guest:Yeah.
Guest:Yeah.
Guest:And my editor was out there, and she just couldn't believe it, because we were basically like, we just booked Marin randomly.
Guest:And all props to Jordan, because, like, obviously I wouldn't have seen you, but also, like, just he saw you and had the thought pierced like a spear through time.
Guest:Like, he remembered the San Francisco panel in 2010.
Guest:He thought about you and the podcast and me and the book, and it just, like, and I'm amazed that you responded so generously.
Guest:So I can't believe I'm sitting here right now.
Marc:But I was trying to remember...
Marc:If you moderated a book event, I did at that place because I've done two events at the Jewish Community Center in San Francisco.
Marc:And my feeling about Jews in San Francisco is they're they're hiding.
Marc:And that's always been my feeling is that you go to San Francisco because they were seriously.
Marc:And then I figured I learned it.
Marc:I guess we're going to ramble on about Jews for a minute.
Marc:Sure.
Marc:Because I think Levi Strauss was a Jew, and I think most of the Jewish aristocracy in the Bay Area were German Jews, which are the worst.
Marc:See, I come from peasant Jews.
Guest:From where?
Marc:Poland, Ukraine, and maybe some German, but not much, and Russia.
Marc:That's my stock as well.
Marc:Yeah, but the German Jews, because my mother's boyfriend is a German Jew, they were the ones that, we can work with Hitler.
Marc:So...
Marc:But they have a different sense of, I think, passing.
Marc:Like, because I don't get the feeling that the Jewish community in San Francisco is that Jew-y.
Marc:Interesting.
Marc:But, you know, I don't know if you hear that.
Marc:But I thought, I didn't know if you had moderated me one-on-one.
Guest:No.
Marc:But then it was a panel.
Marc:Yeah.
Marc:And that must have been the weekend I was there to do.
Marc:I probably did Robin Williams that weekend, that interview.
Marc:Wow.
Marc:Wow.
Marc:Because it was a panel with, who was it?
Marc:It was Merman.
Marc:Yep.
Marc:Larry Doyle.
Marc:Yeah.
Marc:And Daniel Handler.
Marc:Yeah.
Marc:And that's where I met Daniel Handler, and he eventually ended up doing a WTF.
Marc:Oh, nice.
Marc:And Larry Doyle, I worked with at, like, I can't even remember.
Marc:Was it Comedy Central?
Guest:Wow.
Marc:Cranky little fucker, that guy.
Guest:Yeah, I made an ass of myself on that panel.
Guest:I remember just being, it was like the first thing like that I'd ever done.
Guest:And I was like, oh, you live in Baltimore?
Guest:Like, you must be pretty psyched about The Wire.
Guest:Because I just like, watch The Wire.
Guest:And he was like, did you watch the show?
Guest:Like, what are you talking about?
Guest:Because I just had this like naive, like, television city, cool.
Guest:And he was like, it's about how...
Marc:the fucking horrible it is here yeah but how can you not be psyched about the wire see he was just being a dick I mean there's nothing not to be psyched about the wire but he chose in that moment to make you feel like an idiot yes and I felt that way oh good well I felt like I'm trying to recall you were a little snarky weren't you
Marc:I don't think so.
Marc:I think I was holding on by the seat of my pants.
Marc:Sometimes that comes off as snarky when you're completely terrified and a little bit defensive.
Guest:I guess so.
Guest:I remember the thing I remember about meeting you was you said you're Neil Simon's grandson.
Guest:And there was no reason for you to know that.
Guest:So I think my boss, Dave Eggers, must have just told you, I think, somehow to be like, oh, yeah, don't worry about the guy moderating the panel.
Guest:He's Neil Simon's grandson.
Guest:You know, he's not one of the German Jews.
Guest:He's like, you know, good Ukrainian, Latvian Jew.
Guest:Yeah.
Guest:And then you also asked me where I went to college, which I was surprised by, just because I feel like it's one of those questions that, I don't know, I just wasn't expecting you to care.
Guest:Right.
Guest:Yeah, but I was... I was trying to size you up.
Marc:Yeah, you were sizing me up.
Marc:You got big props for the Neil Simon connection.
Marc:Sure.
Marc:But what was the college?
Marc:Oberlin.
Marc:Oh, yeah, sorry.
Marc:My late girlfriend went there for a year.
Marc:The...
Marc:But Neil Simon, so that means Danny Simon was your great uncle.
Marc:Yeah, yeah.
Marc:How do you know about Danny Simon?
Marc:Who doesn't know about Danny Simon?
Marc:Lots of people.
Marc:There's a weird clip going around that I just saw the other day.
Marc:Who was it of?
Marc:Oh, I was watching a doc of, oh, it was Don Rickles.
Marc:It was so weird, man, because it's all this weird footage of Don Rickles, and he was at some event, and there was a drunky lady who kept coming up to him.
Marc:He was like being interviewed on a TV show, and they were just asking him questions.
Marc:He was there with some other celebrity, and there was some drunk woman that kept stepping in going, Don, Don, Danny Seidman told me to say hi.
Marc:Yeah.
Marc:And he didn't register that.
Marc:He just registered that she was drunk.
Marc:And I'm like, I know who Danny Simon is.
Marc:I took Danny Simon's comedy writing seminar.
Marc:You did not.
Marc:I did.
Marc:Wow.
Marc:And I could not understand it.
Marc:I completely did not get it.
Marc:I just wanted him to like me.
Marc:All I remember is he had bought an Irish soda bread in Boston for some reason, and it wasn't what he expected, and he gave it to me.
Yeah.
Marc:But it was like one of these seminars.
Marc:It's like two days, eight hours a day where he's got a system for writing sitcoms.
Marc:Right.
Marc:And it's complicated and there's like diagrams.
Marc:And he was kind of a cranky old Jew that was running a racket.
Guest:Wow.
Guest:I mean, I really...
Guest:There was one time that he and I spent the day together.
Guest:We went to some museum, and it was kind of like my eight-year-old version of the Danny Simon Comedy Seminar, where he was just like, let me tell you about the play I wrote.
Guest:But whereas my grandfather, by contrast, there was never any kind of instruction like that.
Guest:It was always just like... I can't even imagine...
Marc:The chip on Danny's shoulder for the entire life.
Marc:Because that's his, you know, fine, the show of shows.
Marc:But, you know, I was a kid and, like, I knew of it.
Marc:But it doesn't really carry much.
Marc:It's not like a huge amount of gravitas.
Marc:Not as much as being Neil Simon's brother.
Guest:Yeah, yeah.
Marc:And you could kind of feel the weight of that.
Guest:Yeah, it's tough.
Guest:It's tough.
Guest:I mean, yeah.
Marc:Did you have a relationship with your grandfather?
Marc:Yeah, for sure.
Marc:Yeah.
Marc:So you were, like, there when Matthew Broderick was doing...
Marc:What is it, Brighton Beach Memoir?
Marc:Uh-huh, uh-huh.
Marc:And the other one, what was the other one?
Guest:Biloxi Blues.
Guest:Oh, yeah, yeah, yeah, yeah.
Guest:Yeah, he and I went to London, just the two of us.
Guest:You and Neil?
Guest:Yeah.
Guest:I called him Papa.
Guest:Yeah, sure, sure.
Guest:Whose father is he?
Guest:He's my mom's dad.
Guest:Okay.
Guest:Yeah, I was probably like 12 or something like that.
Guest:It was an amazing week.
Guest:We went to see a bunch of plays, including like, you know, I think he didn't do a lot of thinking about where, I mean...
Guest:We went to a British sex farce that was extremely explicit and very uncomfortable to watch together.
Guest:People were just bent over couches and doing it with each other a lot.
Guest:But then we also saw a David Mamet play and a Tom Stoppard play, and it was an incredible trip.
Marc:Do you have brothers and sisters?
Guest:I have a half-sister, younger sister.
Marc:Oh, okay.
Marc:And was that what kind of got you into writing?
Yeah.
Guest:I mean, my mom is a screenwriter also.
Guest:What'd she write?
Guest:Her hits are Moonlight and Valentino, which was Jon Bon Jovi's screen debut.
Guest:Also, Whoopi Goldberg's in that, Elizabeth Perkins, Gwyneth Paltrow, Kathleen Turner.
Guest:Right.
Guest:About the time when my stepdad died when I was in second grade or something like that.
Guest:What about your real dad?
Guest:Real dad, what about him?
Guest:Where's he?
Guest:He's in Northern California.
Guest:I see him tonight.
Guest:Oh, so you get along with that guy.
Marc:He's a good guy.
Marc:So what, did he split like immediately after you were born?
Marc:They got divorced when I was two.
Guest:Oh, and then the new guy passed away?
Guest:Yeah, got hit by a car.
Guest:Oh my God.
Guest:Jogging in the icy Nyack, New York streets.
Guest:That's terrible.
Guest:I agree.
Guest:But you barely knew the guy.
Guest:My stepdad?
Guest:Yeah.
Guest:He was my stepdad for a couple years.
Marc:A couple years?
Marc:But you were two?
Guest:No, no, no.
Guest:I was two when my parents got divorced.
Guest:When Jeff died, I was in like second grade, something like that.
Guest:Oh, that's terrible.
Guest:Yeah.
Guest:Sorry, buddy.
Guest:Hey, I've had some years in between.
Guest:A lot of things have happened.
Guest:A lot of things have happened.
Marc:But so what is the sort of trajectory?
Marc:Because I remember you wrote for, what, McSweeney's The Believer and stuff?
Marc:Okay, so, yeah, I was at Oberlin College.
Marc:Did you do, like, were you, like, an editor of the satire magazine or anything?
Guest:Indeed I was.
Guest:It was called Oberlin on Oberlin.
Guest:I inherited it from some other guy.
Guest:It was a website, and I loved doing that.
Guest:So you came up with websites already.
Guest:How old are you?
Guest:I'm 42.
Guest:Oh, so you're young.
Guest:Am I?
Guest:I mean, I'm 59.
Guest:That doesn't seem that distant to me.
Marc:No, I know.
Marc:But it's weird when like at some point you think everyone's the same age as you.
Marc:And then all of a sudden you you hit 59.
Marc:You're like, what the fuck?
Marc:How old were these people when I knew them?
Marc:You know what I mean?
Marc:Because I have no sense of time because I don't have children.
Marc:Yeah, yeah, yeah.
Marc:You don't have the sense of grown-up time unless you have kids.
Guest:Yeah.
Marc:And you can watch them turn into whatever they turn into.
Marc:I have a 10-year-old.
Guest:And also I've taught a little bit.
Guest:Yeah.
Guest:My own version of the Danny Simon Comedy Workshop.
Guest:And so I feel like, yeah, hanging out with younger people will do that to you.
Guest:So you did the satire mag, and then what, you graduate?
Guest:No, so then I'd do an internship at McSweeney's right after Eggers moves it to San Francisco.
Guest:And behind the scenes, they're starting the Believer magazine.
Marc:So you were living in San Francisco?
Guest:For the summer, doing an internship.
Guest:And then I went back to college, and they were kind of like, look,
Guest:We're starting this magazine.
Guest:We need a managing editor.
Guest:We know you have a year left in college.
Guest:Would you like the job?
Guest:So I dropped out of college.
Guest:Then I moved to San Francisco.
Guest:Dave was like, you should read a manual of the QuarkXPress layout software on the plane so that when you get here, you know how to lay out a magazine.
Guest:And I did that job for like eight years.
Guest:Managing editor of The Believer, yeah.
Marc:That was kind of a great thing, The Believer.
Marc:Was it quarterly or was it by Monday?
Guest:It was monthly.
Guest:It started monthly.
Guest:Now it's fewer.
Guest:I think I wrote a couple of things for that.
Guest:I did a mailbag.
Guest:I think you were gone by then, though.
Guest:No, I wasn't.
Guest:That's why I was moderating the panel because it was about a book that we published that was like – because Amy Sedaris had an advice column.
Guest:Right.
Guest:And then there were a lot of guest –
Guest:And I think you were a guest columnist.
Guest:And I think everybody on that panel was, had done it.
Guest:And there was a book that we published that was collected.
Marc:Oh, that's why I was there.
Guest:I had to look that up too.
Marc:I didn't remember.
Marc:Had nothing to do with me.
Marc:It was a booking.
Marc:It was a book.
Marc:But it was like you book, you chose us.
Marc:Right.
Marc:Yeah.
Marc:You reached out to, cause my lip site used to write for them a lot.
Marc:Yeah.
Guest:Yeah.
Marc:I forgot that you guys are buddies.
Marc:Oh, yeah, yeah.
Marc:He's my best friend.
Marc:Wow.
Marc:That guy.
Marc:I got two best friends.
Marc:Who was the other one?
Marc:Jerry Stahl.
Marc:Okay.
Marc:Yeah, I got the whole spectrum covered.
Marc:Somehow, emotionally.
Marc:But I just saw a website when I was in town.
Marc:I don't remember who I was sitting with that night.
Marc:I think I was there myself that night.
Marc:I think you were, yeah.
Marc:But, yeah, I spent a lot of time with Sam when I was just back.
Marc:So that's what you did.
Marc:So you watched that whole Eggers Empire build and happen.
Marc:Yeah.
Guest:Pretty much.
Guest:I mean, it was already an empire when I got there, but it definitely grew and it was incredible time.
Guest:And it was like my grad school and the end of my college.
Marc:And then what happened after that?
Marc:Did you write other places?
Guest:I didn't do a lot of writing during that time.
Guest:I had like a weird blog that I would just like jazz around on and nobody read it.
Guest:I met my wife, who was a grad student at Berkeley.
Guest:And then, you know, the way that academia works is she got a job in Missouri and
Guest:And about a year before that, I could just see the writing on the wall that she was not going to get a job at Berkeley and we were going to stay there.
Guest:And so I kind of preemptively quit because it was golden handcuffs kind of situation.
Guest:I wasn't really growing anymore.
Guest:I did some weird editorial projects around the Bay Area.
Guest:And then we moved to Columbia, Missouri, where we lived for five years, had a kid.
Guest:I was still working for The Believer remotely.
Guest:So wait, what do you mean like editorial projects?
Marc:How does that work as a freelance editor?
Marc:What do you do?
Guest:Like the Oakland Museum of California got a giant grant to build a freaky website, and I was the editor of the freaky website.
Guest:So that's like a one-shot payday?
Guest:No, it was like a, you know, I was on staff for six months or something, because it was like ongoing.
Guest:It was kind of like being a curator at the museum, but curating words on their website.
Marc:And did you have an art background?
Guest:Uh...
Guest:Could you write about art?
Guest:I was not a writer.
Guest:I mean, as an editor of The Believer, that's an arts background, right?
Guest:Like we're interviewing.
Guest:So you didn't consider yourself a writer?
Guest:No, I didn't.
Guest:I had a little bit of anxiety about that even.
Guest:I was kind of like, I'm an editor.
Guest:I'm in this family of writers.
Guest:I have this freaky blog that my smart writerly friends say is good.
Guest:Right.
Guest:You know what?
Guest:I wrote like book reviews for the San Francisco Chronicle here and there.
Guest:Right.
Guest:But nothing that it was like.
Marc:So that's interesting that I don't know that I ever really thought about that, that being an editor is a job unto itself, that it doesn't necessarily imply writing.
Marc:It implies organization and curation.
Guest:Yeah, I mean, yeah, you definitely have to be as intimate with a piece of writing as a writer is, but you're on the other side.
Guest:You know, think about like...
Guest:Whatever, directing versus acting would be a metaphor.
Marc:Sure, yeah.
Marc:I mean, I've had editors.
Marc:You've got to kind of make things work.
Marc:Right.
Marc:Yeah, and you make some enemies of writers.
Marc:Right.
Marc:So what did you do?
Marc:Like I saw that you did something for the Whitney.
Marc:I'm a big fan of the Whitney Museum.
Guest:That was back in my day of like, you know, doing tiny, weird art projects.
Guest:A friend of mine who's in L.A.
Guest:now, John Hershend, had this magazine called The Thing.
Guest:Yeah.
Guest:That was kind of like McSweeney's.
Guest:Like they were just like, you know, like one issue was like a couple of cups that the artist Chris Johansson designed.
Guest:Sure.
Guest:And what even was that?
Guest:That's in my bio.
Guest:I feel like I took that out of my bio.
Guest:He and I like collaborated on some weird piece of writing.
Guest:He's great.
Guest:But if you put a gun to my head, I don't know if I would tell you what that piece of writing was.
Guest:I was just really proud because, you know, talk about not being a writer.
Guest:I was like, I'm in the catalog for the Whitney Biennial.
Guest:Yeah.
Guest:But, you know, it was probably like 11 words that were all passed through John Herschel.
Guest:So that was it.
Guest:Take that out of my bio, please.
Marc:I don't know where we found it.
Guest:Somebody Googled me.
Marc:Yeah.
Marc:Somebody did some work.
Marc:I don't have much.
Guest:Okay.
Marc:Well, there's not much... I mean, I'll give you anything you want, but I... So, when do you... And I rarely bring it up like that, but I didn't think you were going to mention it, and I just so happen to have just been at the Whitney.
Marc:Oh.
Marc:I went to New York, and I'm a proud member of the Whitney Museum.
Marc:I don't know why.
Marc:I feel like...
Marc:If I'm going to give to the arts, I'll just do the membership thing.
Marc:So that means they update me on things.
Marc:And when I go, I can go right to the front of the line and see the special exhibition.
Marc:It's an awesome place.
Marc:Great place.
Marc:Yeah.
Marc:The new Whitney is spectacular.
Marc:Yeah.
Marc:I mean, it's like one of the best places to look at art that I've ever been to.
Marc:That and the Tate in London, the new Tate.
Marc:Yeah.
Marc:In that big industrial space.
Marc:Incredible.
Marc:Right?
Guest:You know what I'm talking about?
Guest:Oh, yeah.
Marc:I've been there.
Marc:It's the best.
Marc:Yeah.
Marc:That combine building or whatever the fuck it is, that giant hall, it's mind-blowing.
Marc:So at what point in your life did you get diagnosed with this degenerative thing?
Guest:I took a year off of college after my freshman year, and I was in L.A.
Guest:My mom was living in Santa Barbara at that time, and I was interning at KCRW, taking night classes at UCLA, and then I was finally like, okay, this is something that's going on here.
Guest:With your eyes?
Guest:Yeah, so we went to the Jules Stein Eye Institute at UCLA.
Guest:What was going on?
Guest:So I had noticed that I had night blindness a lot.
Guest:Which means?
Guest:Which means, like, you know how you go to the movies and you find your seat?
Guest:Yeah.
Guest:Yeah, it's pretty easy to do that.
Guest:You know, I would see the exit sign.
Guest:I could see the movie fine.
Guest:Yeah.
Guest:But then, like, that, like...
Guest:Like, you know, finding your way through the legs and the seated people's seat empty or not was impossible.
Guest:And so I would, yeah.
Guest:And there were, you know, my friends would go out into the woods at night and just like easily pick their way around trees.
Guest:And I was like walking into trees.
Guest:But it was really ambiguous.
Guest:And I remember my mom even said to me, like, it's dark at night, right?
Guest:Like, it's hard to see.
Guest:And I had this feeling like I wasn't looking hard enough.
Guest:Right.
Guest:Because it's just a weird thing.
Guest:Like, nobody talks about night blindness.
Guest:Right.
Marc:Isn't that weird, though?
Marc:It's interesting the way that people initially respond to issues.
Marc:Like your mom, you know, just is like, no, I mean, you know, like, but that's what we all do.
Guest:Totally.
Guest:I do it to my kid, too, where he's just, like, really sad.
Guest:And I'm just like, I don't want him to be sad.
Guest:So I'm going to, like, bully him out of being sad.
Guest:I'm like, what is wrong with you?
Guest:Don't do that to a child.
Guest:But I'm just like, no, you're fine.
Guest:You're fine.
Guest:Let's move on.
Marc:Yeah.
Marc:The sort of denial.
Marc:Like, I learned very weird things about...
Marc:Well, I had an editor once, Jerry Howard.
Guest:Oh, wow.
Marc:Yeah, yeah.
Marc:For the Jerusalem Syndrome, right?
Marc:And I can't remember what we were talking about, but it was this very quick exchange where I was freaking out about something.
Marc:And I just said, it'll be okay.
Marc:And he goes, or not.
Yeah.
Marc:And I'm like, wow, that's really true.
Marc:And then when my girlfriend got sick, I talked to my mother and people were like, no, she'll be fine.
Marc:It's like, no one knows anything.
Marc:They don't know anything.
Marc:But you were freaked out enough to go to the doctor.
Guest:Yeah.
Guest:I wouldn't even say freaked out enough.
Guest:I think it was more just like, we need to, there needs to be an answer here that's better than like the extremely vague.
Guest:Although my dad being a techie had bought me a modem.
Guest:This is like, you know, I mean, this is back before I was diagnosed, but in those years when- Your stepdad?
Guest:No, my actual dad.
Guest:He was in California.
Guest:We were in Santa Fe, New Mexico.
Guest:And I had this modem I would post to snowboarding message boards on AOL.
Guest:But then I also diagnosed myself and found out.
Guest:Because there's not a lot of reasons why you would have night blindness.
Guest:And so I found some like.
Marc:So you did the early thing of not doing what you're not supposed to do.
Guest:But it was back then you were supposed to do it because the internet was smaller.
Marc:Back then it was special.
Marc:Yes.
Marc:And there wasn't a whole industry based on people self-diagnosing.
Marc:Exactly.
Marc:So the information was more reliable in some way.
Guest:Yeah, although it was alarming, too, because it was like, you go blind with this thing.
Marc:So there was one thing that caused night blindness?
Guest:I mean, maybe there's others, but, you know, if you Google night blindness teenager or whatever, like night blindness, yeah, there's not a lot of reasons for it.
Guest:And what's it called?
Guest:Retinitis pigmentosa, or RP.
Marc:Yeah.
Marc:So you self-diagnosed, and then you went to the doc and got the real diagnosis.
Guest:Yeah, and he was like, it'll be gradual through your 20s and 30s, and then when you hit middle age, it's gonna go off a cliff.
Guest:And there's nothing you can do about it.
Guest:And there's no treatment, but science is making leaps and bounds, so by the time you're in deep trouble, there'll be something.
Guest:And I've heard a version of that every five years since I was diagnosed, and at a certain point, I'm like, there's a giant breakthrough around the corner, and it's been around that corner
Guest:For long enough, I don't give a shit.
Marc:Yeah, but I know, like, it's an odd thing about the senses, I guess, because I know, like, with ears, they've actually done a lot of things.
Marc:Yeah, there's cochlear implants.
Marc:Yeah.
Guest:Badass hearing aids.
Marc:Yeah, yeah.
Guest:But with eyes, I mean, I don't even know how that starts.
Guest:There are wild devices that are just being invented.
Guest:Basically, it's like a cochlear implant for your eyes.
Guest:They are?
Guest:Yeah, but with a giant asterisk.
Guest:I mean, it's not vision.
Guest:It's the same way the cochlear implant is not hearing.
Guest:It's a very different—you can't reproduce the kind of full spectrum that the natural senses experience.
Marc:So what, they put two cameras in your head?
Guest:Yeah, they implant a chip in your retina, and that communicates with a camera, and then it artificially stimulates the retina.
Marc:So what do you see?
Marc:You don't know.
Guest:I don't know.
Guest:It sounds like right now it's not like Predator.
Guest:Remember in Predator when you could see what the Predator saw?
Guest:Yeah, yeah, right.
Guest:I kind of feel like it's like that a little bit.
Guest:It's like you can see high contrast stuff.
Guest:So people who are totally blind from RP...
Guest:can now see like if if like your window is over there and like that was the exit it might help me orient towards the exit whereas without that i would really just have to feel around with my cane for example so it doesn't shift that much but i'm not like seeing child's faces or right reading print or anything like that so is there a part of you that's like going to wait this out and then if they come with some up with something that's amazing it'll just be like just do one eye i want to try it uh
Guest:Yeah, I'm not an early adopter of anything, and I'm not going to be an early adopter of that.
Guest:I wouldn't even get Lasix.
Guest:Yeah.
Guest:And also, like, the halfway thing doesn't feel good to me.
Guest:Like, there's a lot of deaf people who are virulently against cochlear implants.
Guest:Sure.
Guest:Because a lot of times they don't work well, and they kind of create more frustration than—I mean, they're transformative for a lot of people.
Marc:So the arc of this thing—so now you know and you're in your 20s, right?
Marc:Yeah.
Yeah.
Marc:So like for me, I would be consumed with panic like every day.
Marc:You're not that kind of guy, I guess.
Guest:I guess not.
Guest:Yeah, people are confused about this part and they don't believe me all the time.
Guest:Like, come on, you're consumed with panic every day.
Guest:Part of it, I think, is like being in your 20s and that's just, I was like consumed with putting that magazine out, you know, and didn't have a lot of time and didn't want to spend a lot of time thinking about it.
Guest:And it felt distant, you know, like the diagnosis of middle age at that point in my life did not, I didn't have a good sense of like,
Guest:how many miles we had to go.
Guest:Right, sure.
Guest:It was just like that is a thing that like fatherhood or death someday, but like why am I going to be thinking about fatherhood or death on Tuesday, March 3rd, 2001?
Marc:Right, and I can pretty much see.
Marc:Yeah, I can see everything.
Guest:I was still driving, you know, and then I think at a certain point I was only driving during the day around then because it was like...
Guest:Probably not the safest thing to do.
Marc:So you're starting to adapt.
Marc:Yeah.
Guest:Yeah.
Guest:You know, and like in my office, I would wear headphones because it was a big open plan and it was chaotic.
Guest:And there was, I would notice people say like, oh no, you gotta, you gotta like tap him on the shoulder.
Guest:Cause like the intern would come up and just like wave at me and I would just be like staring at my screen and not see him.
Guest:So like the peripheral, basically the way it works is there's the night blindness, but then the other thing that starts happening is gradual tunnel vision.
Marc:And do you see it like that, or you just sort of just have a disconnect over here?
Marc:Like, do you see, like, is it a black ring around your vision?
Guest:No, because the brain just adapts.
Guest:So, like, if you imagine, like, what you can't see, like, what is... There's no black hole, like, behind your head where you can't see, right?
Guest:It's just, like, that's not information that you have.
Guest:Right.
Guest:And so it kind of becomes like that.
Guest:Like, I can see... When I'm looking at your face, I can see basically your eyes and, like, a little bit of your hand that's up there.
Guest:Yeah.
Guest:And that's it.
Guest:But I'm not, like...
Guest:Aware of the edge.
Marc:Right, right, right.
Marc:Yeah, it's not like a camera where it's like an iris.
Marc:Right.
Marc:Yeah, things slowly go, they just go away.
Guest:I mean, if we could see the time lapse of my vision, it would.
Guest:Yeah.
Guest:But the brain just doesn't.
Marc:Brain's kind of amazing, right?
Guest:Yeah, very amazing.
Marc:So how do you start to, like, what is the arc of it?
Marc:When do you start to be compromised to a point where you need help?
Guest:It's a fat, blurry line because, you know, okay, so I don't drive at night, but that's not a compromise.
Marc:Sure, you're just like an old person.
Guest:Right.
Guest:Then I don't drive during the day.
Guest:I mean, that's the first major milestone.
Guest:Right.
Guest:And especially because that happened right when my wife and I moved to Missouri, where I left behind the Muni of San Francisco and the BART system and all that, and I'm suddenly, like, in this small college town where it snows, and I'm just, like, sitting in this house, you know, kind of being like...
Guest:Oh, oh, is she leaving the house?
Guest:I'm gonna get a ride downtown so I can go get a cup of coffee.
Guest:Oh, wow.
Guest:And now, are you panicking then?
Guest:That's when I started to, again, I don't know if there's panic there.
Guest:I mean, the way I experience panic, Mark, is like there are moments when I get freaked out.
Guest:Yeah.
Guest:But there's not, I feel like you are imagining like a low level terror through my days and it's much more like just something will come up and confront me and I'll feel very bad and then I'll move on.
Marc:Well, I think that's healthy, but also like this is not, but I panic about nothing.
Marc:And the truth, that's just my nature, profound anxiety.
Marc:But also it's not cancer.
Marc:And I imagine that not unlike your brain adapting innately to the compromise in your vision, that some part of you is putting this into perspective.
Guest:It's not cancer is an important observation, I think.
Guest:It doesn't hurt, right?
Guest:Like, I'm not, I'm just sitting there.
Guest:And also, like, I've got this cool wife.
Guest:We've got a dog.
Guest:I've got work that's interesting.
Guest:Like, my life is good.
Guest:So, yeah, there's this, like, giant, weird, terrifying cloud that is a permanent fixture of the horizon.
Guest:But, like, again, like, I'm sitting here, like, what is there to do about it right now?
Guest:But are you starting to think in terms of being blind?
Guest:Yeah.
Guest:Yeah.
Guest:The real turning point, stopping driving was, I would say, milestone one.
Guest:And then the even more important milestone was I had started to have more mishaps.
Guest:I hip-checked a toddler and just sent him hard to the ground.
Guest:He wasn't injured, but it felt really bad, and the parent was really pissed.
Guest:Or kicking people's dogs out.
Guest:And you don't know it.
Guest:Yeah, yeah.
Guest:And their assumption is like, what's wrong with this guy?
Guest:They're just like, is he on drugs?
Guest:What is his problem?
Guest:And it felt bad.
Guest:And so I was like, okay, I need a white cane.
Guest:And as soon.
Guest:Because if you kick a toddler with a white cane, like it's, you know.
Guest:Thank you.
Guest:Like, oh, bless you.
Guest:Yeah.
Guest:I have a wonderful day, sir.
Marc:Stop crying.
Guest:I'm so sorry that my toddler was in your way.
Guest:It's their fault.
Guest:Yeah.
Guest:But as soon as that cane comes out, I don't care how much vision you have.
Guest:Like you are marked and the whole world treats you differently.
Marc:And you did that in Missouri?
Guest:Yep.
Guest:Although I didn't really use it full time.
Guest:Like I owned it.
Guest:I bought it in Missouri, but I would keep it folded up in my bag and really only take it out if I was in like a dark bar.
Guest:If I sensed toddlers in the region.
Guest:But then when we moved to Massachusetts, which was about like seven or eight years ago now, seven years ago, then I was like, okay, I don't know anybody.
Guest:I'm going to be a cane user.
Guest:Because that was the problem, was like, bringing it out of Missouri, there were people who didn't know I had an eye condition, and so it felt stressful to be like, you know, oh, did Andrew suddenly go blind?
Guest:So in Massachusetts, it was like, I'm just an out-of-the-closet guy with a cane, and that's gonna be, and it was a great decision.
Guest:But there was so much fraudulence, because I was like, I could see stuff, but there I was, like, tapping around.
Guest:So you felt like a fraud?
Guest:So much, and I still to this day feel like one.
Guest:Really?
Guest:Oh yeah, it's a huge part of this experience for me.
Marc:Now, but how are you adjusting?
Marc:And I know you cover this in the book.
Marc:I mean, how are you adjusting emotionally, like with your wife?
Marc:I mean, because I would have to assume that there was some fairly deep conversations about the future.
Guest:There should have been.
Guest:Yeah.
Guest:And eventually, like, writing the book forced them in some ways.
Guest:But there weren't.
Guest:Like, there's a scene in the book where Lily and I were in New York visiting friends and her family.
Guest:And we went out to a restaurant in Brooklyn.
Guest:And it's, like, very dark as restaurants in Brooklyn are.
Guest:Sure.
Guest:And I had the cane folded up in my pocket.
Guest:This was before we moved to Massachusetts.
Guest:It folded up in my bag.
Guest:And I was like...
Guest:finding a bathroom is up there with going to get more popcorn or go to the bathroom at the movies.
Guest:It's terrible.
Guest:So I was like, okay, I'm gonna use the cane.
Guest:And I'd never talked to her about the cane.
Guest:I'd never talked to her about cane anxiety.
Guest:And so I just produce it, I unfold it.
Guest:She had not seen it?
Guest:She knew that I had it, but she'd never seen me use it.
Guest:Oh, wow.
Guest:And it's an intense thing.
Guest:And it was like, you know, it zapped her a little bit.
Marc:So it's sort of like you're introducing something to her and simultaneously to her family and to the entire restaurant.
Marc:Right.
Marc:So now, you know, from her point of view, you know, it all converges on this thing that comes out and...
Marc:So what did she feel?
Guest:She was like, she kind of said to me, like, you don't need that here.
Guest:Like, you know, like, why are you using that?
Guest:Put that away.
Guest:But that was, you decided to come out.
Guest:Yeah.
Guest:And it wasn't like, today's the day.
Guest:It was really just like, I don't know, I guess now.
Guest:And, you know, that was rough.
Guest:That was a rough moment.
Guest:And it set me back, you know, but then.
Guest:Set you back how?
Guest:It set me back because I was like, oh, yeah, this is like, it does make me look vulnerable.
Guest:And like, Lily doesn't like it.
Guest:And like, she doesn't like it for a good reason, probably.
Guest:And like,
Guest:All the shame that I felt about it was like validated and it's a shameful thing, you know, and this is by the way, at that point, at that point.
Guest:Yeah.
Guest:I mean, yeah, today I, I rock it and I'm much more confident with it, but, but like talk to any person who's gone blind and I don't care if they've gone totally blind or if they're in my position, like the cane is rough.
Guest:It is a tough thing to accept.
Guest:Yeah.
Guest:Um, because it's just, just like I said, like it changes the world instantly.
Guest:Yeah.
Guest:The way they see you.
Marc:And did you have to get cane training?
Guest:Yeah.
Guest:Yeah.
Guest:Oh, really?
Guest:Oh, yeah.
Guest:Yeah.
Guest:I mean, for a long time, I was just figuring it out on my own.
Guest:And then when I started to get training, they were like, oh, no, no, no.
Guest:Because I would just sort of carry it like ceremonially, you know, like this is this like toddler, you know, like kryptonite.
Guest:Yeah.
Guest:But then they were like, no, no, no.
Guest:There's there's a way to use it.
Guest:But I wanted to add just about Lily, to be fair.
Guest:When she read the first draft of the book and that scene where I was very much like, and then my wife, who is totally unsympathetic.
Guest:Can totally see.
Guest:Yeah, cited.
Guest:She told me to put it away.
Guest:And then we talked, and it was like, oh, no, that was unfair to her, like, just springing it on her like that.
Guest:And so those conversations that you would imagine we would have already had only happened.
Guest:But then, but now, yeah, so anyway.
Marc:But what was that, though, like, you know, after that?
Marc:Like, you know, you get back to the hotel or wherever you're staying.
Marc:Yeah.
Marc:And what was that?
Marc:What was that conversation?
Guest:It took me a minute to, like, simmer down, you know, but I think I said to her, like... In terms of how she reacted?
Guest:Yeah, because I think...
Guest:You know, she was like, you look so vulnerable.
Guest:And I was like, in Greenpoint, like, you know, like fancy restaurant?
Guest:Like, who gives a shit?
Guest:Like, I'm going to get mugged in the restaurant?
Guest:You know, and her point was more just like, she wasn't emotionally prepared for it.
Guest:Sure.
Guest:And she had an emotional reaction.
Guest:So it took me a while to realize that, like, you know, I think there's a way in which this experience is very, like...
Guest:egotistical or like like like it like feeds my ego a little bit right even though it's like a sad thing and yeah there's all that it's also like you know like this is happening to me and so I'm the only person who has skin in this game right and so you should just everybody should adapt around me and you know the thing I realized with Lily was like I have to make room for her emotional response to it too and like the practical changes that she has to do and that is something that has taken a long time but that is extremely important to our marriage
Marc:Right, but I have to assume that even back when you first started, when you were getting diagnosed and stuff, I don't remember what the timeline is.
Marc:Were you together when you got diagnosed?
Guest:No, I was in college.
Marc:So she knew going in, but I think, again, there's that sort of functioning sense of denial that kind of puts off...
Marc:the inevitable, and then when it happens, it's still jarring, even if you know it's coming.
Marc:Totally, yeah, for both of us.
Marc:Yeah, and so when you've talked to other people who have lost their sight, have their experiences been similar?
Guest:Yeah, that's been the amazing thing about publishing this book.
Guest:It's like every day I'm getting three emails from people, and it's awesome because there are people who are born blind, people who have more vision than I do, but it's just very validating that I captured something about this experience that speaks to other people with disabilities.
Marc:Which is essentially, you know, other people's feelings that you may not consider.
Marc:Your own denial, their denial.
Marc:And then, you know, the reality of actually being that vulnerable in some respect.
Guest:All of that.
Guest:But then also, like, the way that the vulnerability is actually overblown in a lot of ways.
Guest:And the way that, like, you'll walk into a coffee shop and people will be like, oh, let me...
Guest:let me protect you from the coffee.
Guest:Right.
Guest:It's like, no, no, like I'm good.
Guest:I'll buy the coffee.
Guest:So like it can swing way too far in the other direction too.
Marc:And, and so those first conversations with your wife and what, what, what was the arc of time?
Marc:I seem to be using the word arc a lot because there's really an arc here.
Marc:You know, it's not just a life story.
Marc:You know, you made a movie.
Guest:It's like you went blind.
Guest:Right.
Guest:Did I though?
Guest:I mean, cause I can see you, you know, a lot of stuff over here.
Marc:Yeah, I know.
Marc:But I mean, well, well, that's relative.
Marc:It's sort of like my dad not wanting to use his cane, even though he can't walk anymore.
Marc:Exactly.
Marc:Yeah.
Marc:You know what I mean?
Marc:Yeah.
Marc:Or like he refuses to get a walker.
Guest:So he'll he'll hobble on a cane.
Guest:I mean, I just I made the joke, though, because like blindness, people only think of it as a binary, you know, and it's like you went blind.
Guest:Oh, OK.
Guest:So somebody pulled a little cord and the lights went out.
Guest:But it's like your dad with the cane.
Guest:Like, yeah, there is such a spectrum.
Guest:And right.
Guest:And that's been such a mind fuck to like try to understand what blindness is and how much of it I get to.
Guest:to lay claim to while I can still see six degrees of my visual field.
Marc:And that's something that you are conceiving only in relation to people's judgment of you, in a way.
Guest:Right, right, yeah.
Guest:Right?
Guest:Yeah, I mean, disability and blindness is so social, is like a weird revelation that I had.
Guest:because if you're by yourself, you're just the dude doing the thing, right?
Guest:Maybe you have to put some tape on a thing so you can see it, or put a bump dot so you can feel it, but that's not disability, that's just like you're making your house better.
Guest:But as soon as you're out in the world, people are having judgments about you, they're having expectations of what you're capable of doing, so yeah, it's an intensely social experience.
Marc:Because my experience with you, even in that brief passing moment, and I don't know you and I haven't known you for a long time, and after you and I had the exchange and you acknowledged who I was,
Marc:And then, you know, after you gave me the book and I and I and I browsed through it and I and I learned a little more.
Marc:But even before that, I said, of course, like, because you were looking right at me and you're looking right at me now.
Marc:And then I was sort of like, well, he used to be able to see.
Marc:So he knows generally where it's coming from.
Marc:So I even though you can see shapes or whatever and you do know, you know, you can you can kind of center forms that are moving.
Guest:Yes.
Guest:Yes.
Guest:Yes.
Marc:But also you had a full life of sight.
Marc:Right.
Marc:So once the brain adapts to the compromise in your senses and starts to make adjustments, that stuff that it's already wired in, based on sounds, you're going to sort of have a sense of it.
Marc:Because it seems to me that people who are blind for a lifetime, they're always kind of looking off.
Marc:I don't know if that'll continue if you continue to lose your sight, but you were locked in.
Guest:I've hung out with a lot of blind people.
Guest:And by the way, I still have some acuity too.
Guest:So I could even see like, that's a gimme shelter poster over there.
Guest:Oh yeah.
Guest:Oh, so you're not even blind.
Guest:I'm not even blind.
Guest:That's what I'm trying to tell you.
Guest:This is like a, a giant ruse that I'm pulling over.
Guest:It was just a, you saw a window and you'd be like, this is my time.
Guest:I'm going to write a book.
Guest:Remember the dad and the cane.
Guest:That's what it's about.
Guest:Uh,
Guest:But I have hung out with totally blind people who've been blind for a long time, and they do lock into your eyes sometimes.
Guest:And it can be disarming, because you're like, oh, can you see me?
Guest:But there's this whole world of Stevie Wonder truthers, people who think that Stevie Wonder's faking his blindness for similar reasons, where he'll
Guest:you know, catch a falling mic stand and be like, how could a blind guy do that?
Guest:And it's just like making eye contact, catching mic stands, like buying televisions, all these things that people like think blind people can't do, but they do.
Guest:And yeah, it's normal.
Marc:So the public misconception is you're only blind if you can't see anything.
Guest:Exactly.
Guest:And not only that, but that you're like have to mostly be led places and helpless.
Guest:Right.
Marc:But now let me ask you a question about the Gimme Shelter poster.
Marc:Was it because you're familiar with that poster or you can see the lettering?
Guest:I can see the lettering.
Guest:Oh, okay.
Guest:Yeah, yeah, yeah.
Guest:But it is interesting the way that knowledge informs vision.
Guest:In other words, like I have a friend.
Guest:Well, I'll talk about myself.
Guest:Like if I know what something is or if I know where I am, it's much easier to see.
Guest:You know, I've been sitting here for 10 minutes.
Guest:Like I had a moment to sort of clock that.
Guest:But like when I'm moving around, like weird things happen where I'll be like, oh, that's weird that that 11-year-old girl has a beard.
Guest:You know, and then I'll be like, oh, okay, there's like a scarf situation happening or something.
Guest:You know, but like, so things like that happen more and more as I lose vision.
Guest:But if I'm like in my kitchen and I know my back is to this east wall, I'm good.
Guest:I can see a lot more than if I'm moving through the world.
Marc:What's with all these short bearded people in winter?
Marc:Exactly.
Marc:Exactly.
Marc:So so how does that?
Marc:Well, I mean, now that you explain it, it's like, you know, blindness is relative to, you know, how incapacitated you are to do normal everyday things.
Right.
Guest:I don't know if I'd put it that way.
Marc:I mean, I just mean that, like, you know, just just because you can read that poster, you know, doesn't mean like you have peripheral vision.
Marc:Right.
Marc:It doesn't mean that you can identify objects on a table if they're too small.
Marc:Right.
Marc:Doesn't mean that you can identify a person with a beard or a scarf.
Marc:Right.
Marc:So, I mean, you know, that's legit.
Guest:Yeah.
Guest:I mean, yeah, like legal blindness, it's such an arbitrary line, right?
Guest:They were just like, okay, let's, we got to dry lawn somewhere because we can't give these benefits to everybody.
Guest:Like when government assistance programs were built.
Guest:So they were like, okay, it's, if you can't read the giant E at the top of the chart with corrective lenses, you're legally blind.
Guest:Or if your visual field has shrunk to the point where, like you said, you can read the Gimme Shelter poster, but then if I'm going to try to get up and leave your studio without my cane, I'm going to like cause $10,000 worth of damage.
Marc:Nothing in here is worth it.
Guest:Really?
Guest:It's 300 watt dollars worth of damage.
Marc:Yeah, there you go.
Marc:Maybe 300.
Marc:And it probably won't break it.
Marc:So what is the process of sort of integrating your kid into this and then, you know, things you start doing?
Marc:Because it seems that...
Marc:The thrust of this thing is that, you know, you're living a normal life, though it is a disability, that the perception of what blindness is is a misconception.
Marc:And that, you know, there's an argument to be made that people with disabilities, as they adapt, should only be seen as people that have to live life differently.
Mm-hmm.
Guest:I mean, the thing about my kid is amazing because like every new milestone that I hit where I'm like, OK, I'm buying a cane.
Guest:What kind of cane?
Guest:Like now I use the cane.
Guest:You know, like the screen reader, like my phone talks to me and like that's this like a cult thing.
Guest:My kid, like the only dad he's known is a dad with a phone that talks to him who uses a cane.
Guest:And so frame is totally normal.
Guest:And that actually is a powerful thing for me because I kind of see that normalcy reflected back.
Guest:And I'm like, oh yeah, this is just a part of our life.
Marc:Well, that's interesting with kids and how because they are innately adaptive because they're growing.
Marc:So their perception of if they're getting what they need emotionally and hopefully...
Marc:uh, physically that, you know, they're not going to, it's like color lines.
Marc:It's like anything else.
Marc:If they're not taught that, you know, dad's in trouble, then it's just dad.
Guest:Right.
Guest:Yeah.
Guest:Yeah.
Guest:And he hears me making comments.
Guest:Like we're watching a TV show and there's like a sad blind person and I'm like yelling at the screen and he's like, all right, I'm yelling at the screen too.
Guest:Like this is bullshit.
Marc:Yeah.
Marc:So, well, that's good.
Marc:So he's learning a certain amount of acceptance and tolerance in a broader way.
Marc:Totally.
Marc:Than just you running into him occasionally.
Guest:Right.
Guest:Yeah.
Guest:Yeah.
Guest:Yeah.
Guest:Yeah.
Guest:Yeah.
Guest:He knows not to take it personally when I step on his feet.
Guest:And how's your wife doing with that?
Guest:You know, it's been a journey, but yeah, we are in a very different place now than we were when I first started.
Marc:What were the sort of obstacles other than the first initial Cain thing?
Marc:What continues to sort of...
Guest:I mean, I think like any marriage, it's all about negotiating the sort of duties of getting through life together, right?
Guest:And I think like as my, the way that I inhabited space and like the things, figuring out what I was capable of doing or how I had to change my techniques to do that.
Guest:Like there's always these sort of like latency periods where I'm like, like for example, she would just be like, I thought you were going to clean the kitchen and like half of that counter is like fucking disgusting.
Guest:And I would be like,
Guest:really I like wipe down the counter and I'd be like oh huh but then there's that moment where I would get really hurt because I'd be like don't you remember I'm going blind you know and but then at a certain point I have to be like it's still not fair to like say I'm going to clean the kitchen and then do a terrible job of it just because I can't see like the kitchen I can only see like a eighth of the counter at any given moment so like but you know lo and behold blind people have figured out like if you like split the counter into quadrants and make sure you just like wipe down quadrant one two three four like you can do a pretty good job wiping down that's part of
Guest:the adapting.
Guest:Yeah.
Guest:And so like, so, so there's the, but there's always that kind of like push and pull where it's like, there's a moment where I'm like, I don't realize it.
Guest:She doesn't realize it.
Guest:There's conflict.
Guest:And then we catch up.
Marc:But see, but, but that is like sort of the fundamental issue.
Marc:And I think it's something you, you deal with in the book in terms of, uh, you know,
Marc:you're locking into self-pity or victimhood versus, you know, adapting and functioning in life, overriding the self-pity or the need for special treatment.
Guest:Yeah, yeah.
Guest:I mean, it's easier said than done.
Guest:You know, there's a friend of mine, Will Butler, who lives in L.A., who's a blind guy.
Guest:He's kind of like one of my blind mentors.
Guest:He talked about this phenomenon, like the only blind guy in the room, which is like blind people.
Guest:There's like a phenomenon.
Guest:I think another blind person, Georgina Klieg, came up with it.
Guest:But
Guest:Basically, it's like you kind of feel good being all the attention that blindness brings to you, right?
Guest:Like you go into the coffee shop and sometimes it's shitty, but sometimes it's like, ah, sir, let me give you like our finest vanilla roast because you are like a weird, you know, and some blind people, I think, really get into that.
Guest:And in a marriage, I think you can see it happen, not hopefully in mine, but like,
Guest:You know, the partner becomes a sort of butler where it's like, oh, well, he's blind.
Guest:So I just make him his coffee every day and I do all the dishes and I do everything.
Guest:And that just seems like that would not work in my home.
Guest:And I don't want it to work in my home.
Guest:Sure.
Guest:So I do have to like fight against that inertia.
Guest:But I can feel I can feel it in myself.
Guest:I'm like, we're sitting at this taqueria.
Guest:I have no idea where the trash can is.
Guest:Yeah.
Guest:We've got this like full table of stuff.
Guest:We got to take the trash can.
Guest:Like, I'm just going to let her do it.
Guest:And then I have to rage against it and say, no, I will bumble around the taqueria and put that shit away because I don't want to be that only blind guy.
Guest:But are there moments where you go rage against it and you go, no, and then midway through your wife's like, I'll do it.
Guest:Yep.
Guest:I would say like several times a week.
Guest:Yes.
Guest:But I still rage.
Guest:I'm still making progress.
Guest:Thanks for the effort.
Guest:It's just that I can't imagine the sort of watching and then just deciding sort of like, okay.
Guest:Yeah.
Guest:I mean, the mowing the lawn is a thing where she's like.
Guest:Oh, come on.
Guest:She's like, I'm really good.
Guest:You can get a guy to mow your fucking lawn.
Guest:I don't know.
Guest:I guess we should.
Guest:But yeah, she's like, I like mowing the lawn.
Guest:Yeah.
Guest:I'm like, really?
Guest:I should probably be doing this.
Guest:I mean, I have a whole chapter in there called The Male Gaze that's, like, about my masculinity and, like, sort of the relationship between masculinity and disability.
Guest:Because it is, like, emasculating a little bit.
Guest:So what are the experiences with that?
Guest:I mean, it's like, you know, like, we go to the dark restaurant and, like, I want to have my hand on her back guiding her through.
Guest:But I, like, will put my hand on her shoulder and she'll guide me through.
Guest:Right, right.
Guest:Or, like, driving is a huge one.
Guest:Yeah.
Guest:Like, I had no idea that driving and...
Guest:my gender were so intimately linked, but like I grew up in, you know, I love driving and just, just like there's something that's like a loss that I feel a lot.
Guest:It's like, I would just love to drive them around.
Guest:Yeah.
Guest:Yeah.
Marc:Well, there's that whole thing about, you know, the, the dad who doesn't want to, he knows where he's going.
Marc:He doesn't need a map.
Marc:Yeah.
Marc:That would be that form of ridiculous masculinity.
Guest:I know where I'm going.
Guest:I'm driving the car.
Guest:But instead, I am the map.
Guest:I control that Google Maps app with precision.
Guest:I curate excellent playlists.
Guest:I try to hold up my end of the bargain in the passenger seat.
Marc:Well, what has been the adapting process of, you know, writing and doing that kind of stuff?
Marc:Are there different?
Marc:I imagine that all that stuff has been made visually impaired sort of tools that you can use, right?
Guest:There are tools, but it's funny, like, you know, having grown up my whole life, being able to access the mainstream tech and like having the money to like buy a Mac book.
Guest:Yeah, sure.
Guest:You know, every couple years, whatever.
Guest:Yeah.
Guest:The world of assistive tech, it's just like second class to the max.
Guest:It's like you basically can only buy things at like the weird secondhand, not secondhand, but like, you know, like the knockoff of the knockoff.
Guest:Right, right.
Guest:And like nothing works quite right.
Guest:Right.
Guest:You know, hell, you can do some basic stuff, but like it's just not the same experience.
Marc:Well, that's interesting.
Marc:So that world of assistant tech.
Marc:Assistive.
Marc:Assistive tech is still sort of like Soviet in a way or kind of like because there's not a huge market.
Guest:Exactly.
Guest:So it's relative to, you know, what they can make.
Guest:Exactly.
Guest:But it's interesting because like Apple, for instance, like your iPhone, I'm assuming you have an iPhone.
Guest:Yeah.
Guest:Your iPhone, I could in five seconds get it talking.
Guest:Like if you like, you know, heaven forbid went blind right now, you would need to buy a new phone.
Guest:Right.
Guest:That thing has built in screen readers.
Guest:Yeah.
Guest:So there is like a kind of interesting mainstream right there.
Guest:But like it's that screen reader like will not work on a lot of the websites that you use.
Guest:It takes a lot of getting used to.
Guest:Now, is that a frustration you have?
Guest:Is that something you rally against?
Guest:I am.
Guest:There is like a daunting politicization that's happening at this moment with me and particularly with the tech stuff, which is what a lot of blind people do.
Guest:are all about because it's like, you know, the problem of blindness is access to information fundamentally.
Guest:And so IT is like an important part of it.
Guest:But yeah, I do get pissed off because, you know, it's like I'm a second class citizen all of a sudden and like I don't have a right to like, you know, use the website to buy the pajama bottoms that everybody else is buying.
Guest:Like, why not?
Guest:Why can't I do that independently?
Guest:Right.
Marc:And you would think that given the number, I would imagine, of visually impaired people, that would be all you need is one blind guy in the in the main office.
Marc:Right.
Marc:And the head office to go, hey, we're leaving money on the table here.
Guest:But the head office is not going to hire that guy because they look at him and they're like, I don't even know how he's going to make a PB&J, let alone like swipe into the office, get to the office and like use a computer to do the job.
Marc:So you've become active in this community in that way?
Guest:Yeah.
Guest:I mean, I wrote about him a lot.
Guest:Like, I still think of myself—I keep myself a little removed by being a journalist.
Guest:I'm, like, not quite ready to be, like, capital A activist.
Guest:Right.
Guest:But I'm getting there.
Marc:Yeah.
Marc:Well, it's got to be frustrating at some point.
Marc:I mean, and it seems to me that—
Marc:You know, if there is a silver lining, it's that it's given you a very specific voice.
Guest:Absolutely.
Guest:I mean, you know, you were asking me about being a writer and like before, what was I writing about?
Guest:Right.
Guest:I'm like, I ate a burrito and then wrote a thousand emails at the believer.
Guest:Yeah.
Guest:A poem by Andrew Leland.
Guest:You know, like, nobody gives a shit.
Guest:It's pretty good.
Guest:Yeah.
Guest:You know, or maybe a dozen people give a shit.
Guest:Sure.
Guest:But, like, this experience, you know, like, people are interested in it.
Marc:But not just interested.
Marc:It raises awareness.
Marc:And there are people in the position you're in that don't have a voice.
Marc:Yes.
Marc:Right.
Marc:Right.
Marc:And there are people diligently working to advance technology and socialization of visually impaired people and make life at least as normal as can be for those people that are unsung heroes in this community.
Guest:Yeah.
Guest:It's funny, writing the book, I didn't think about that in those terms.
Guest:Because I think as a reader, I just hate it when people are like, and this book is important because it's going to make you care about shit you don't care about.
Guest:But I don't care about that shit, so leave me alone.
Guest:So I felt like I really wanted to approach it just as my interest as the guy who ate the burrito and was writing the emails.
Guest:What am I interested in from that perspective, the old me?
Guest:as a way to pull everybody else in and be like, actually, there's wild shit going on in the world of blindness that you should care about.
Guest:And then, as a net effect, people end up with a, like, hallmark, like, and you should care and make your website accessible.
Guest:But I feel like if I started from that, like, politicized place, nobody would care.
Marc:Well, it wouldn't be honest to your story either.
Marc:Yeah.
Marc:Right?
Marc:I mean, you know, it's something that's going to unfold, as I imagine –
Marc:Writing this book that, you know, you and you were sort of just to do basic research in terms of certain parts of the book.
Marc:You had to really engage with the community.
Marc:Totally.
Guest:Yeah.
Marc:And like, who would you reach out to?
Marc:Like, how did you go about that part of putting this together?
Guest:Yeah.
Guest:I mean, there's it's interesting because I think people do tend to think about like the African-American community.
Guest:Right.
Guest:Or the deaf community.
Guest:And there is like a building somewhere where the leaders all gather.
Guest:And it's obviously not like that with blindness either.
Guest:And there is a group called the National Federation of the Blind who I ended up writing a lot about because they're like the self-described militant blind people.
Guest:And it's just fascinating.
Guest:How so?
Guest:Well...
Guest:They argue that blindness is an incidental, neutral characteristic and that like the only thing that blindness is an inconvenience, but like it's like hair color.
Guest:Like, yeah, you've got brown hair.
Guest:Yeah, I'm blind.
Marc:That's well, that's that seems to be a there's a spectrum of that to all disabilities, it seems in terms of the ones where people can function.
Marc:That that point of view is important that, you know, that that is incidental.
Marc:We're still functioning people.
Marc:Yeah.
Marc:We just need access to society.
Guest:Yes.
Guest:The problem is not in me and in my body.
Guest:It's in you and failing to make a Web site that I can use.
Guest:Right.
Guest:Right.
Guest:Yeah.
Guest:So that's a really powerful idea.
Guest:But.
Guest:There's just some, like, interesting sticky parts of it when you get into the details.
Guest:Like, so, for example, when, you know how on street corners you can push a button and then it'll chirp to let you know when it's safe to cross?
Guest:When those were first invented, the NFB said, hell no.
Guest:These make it seem like blind people are helpless.
Guest:You think I can't hear when there's an idling truck at the corner?
Guest:Like, no wonder there's a 70% unemployment rate for blind people.
Guest:people.
Guest:And then there was another group of blind people who hate the NFB, and they were like, we need these.
Guest:You guys are assholes.
Guest:And so all these crazy battles, like accessible currency, NFB, same thing.
Guest:We don't want paper of different sizes for the dollar bill.
Marc:No, we can figure it out.
Marc:Right.
Marc:We're willing to get hit by cars and be taken advantage of financially to maintain our integrity as humans.
Guest:I mean, you know, that would be what the anti-NFB folks would argue.
Guest:So, yeah, I kind of started finding out all these different factions, and there's like...
Guest:there's like this, also there's this very contemporary movement called the disability justice movement that hates the old school civil rights movement because they're like, all they care about is blindness.
Guest:You know, and it's run by white, cisgendered, heterosexual blind guys.
Guest:What about people with multiple disabilities who are like,
Guest:You know, queer women of color.
Guest:Yeah.
Guest:You know, and the sort of like bringing intersectionality into it.
Guest:And so I was like interested in those battles.
Guest:And like there's just like all these different divisions and it fractures.
Marc:And so that's why it's just like just like leftist politics in general.
Marc:Indeed.
Guest:Yeah.
Guest:Well, and also like, you know, I think I had an assumption that like, OK, so this is a marginalized minority community.
Guest:It is going to be a largely left wing.
Guest:group.
Guest:And it's absolutely not.
Guest:Like the NFB in particular is full of Republicans.
Guest:And there's a, you know, I met a woman at the, at a Braille book fair at a blindness convention.
Guest:And she was like, you know, I heard, uh, the NFB was a radical organization, but then I looked up radical in dictionary just meant at the root of things.
Guest:But like, she's a lifelong Republican, but like, there's a lot of blind people who are like Republican in their politics.
Guest:But then when it comes to blindness, they're like anarchists, uh, which is, which is fascinating.
Marc:Yeah.
Marc:So what are some of the other kind of organizations that you've had to deal with?
Marc:Or what else is interesting about entering this community in general?
Guest:Yeah.
Guest:Well, so like in Massachusetts when my doctor was like, okay, you are officially legally blind.
Guest:I got access.
Marc:Is that a night for a big dinner or?
Marc:I was psyched.
Guest:Yeah.
Guest:Because you talk about imposter syndrome.
Guest:If somebody's like, I'm feeling like a fraud carrying this cane around and finally like a doctor with a Harvard email address is like, you are blind.
Guest:I was like, phew, okay.
Guest:I'm in the club.
Guest:Do you carry that in your wallet?
Guest:I got a card.
Guest:I could show it to you.
Guest:Oh, you got a card.
Guest:Yeah, because then it gets me to ride the bus for free.
Guest:The NFB would say, why are you riding the bus for free?
Guest:Pay like everybody else.
Guest:But I can if I want to.
Guest:No.
Guest:But so once I got access to those services, then there's these cited Massachusetts government employees who are teaching me how to use a cane, teaching me how to use Braille.
Guest:And there was that icky feeling of paternalism a little bit.
Guest:They're just like, oh, okay, so you probably don't want to do this.
Guest:And so...
Guest:That was a big divide that really drew me to the NFB in particular because I was like, where are the blind people who don't feel like this and who aren't going to talk to me like this?
Guest:And I went to a training center in Colorado.
Guest:Yeah.
Guest:That's run by the NFB.
Guest:Yeah.
Guest:That's run by blind people.
Guest:And so like you're instead of like the sighted Braille teacher who I had from Massachusetts who was like,
Guest:I don't know, man, you should probably just use one finger.
Guest:I don't know why.
Guest:I've seen blind people use more than one finger.
Guest:And then a blind person, it's like trying to learn how to ride a bike from somebody who's like, I've watched a lot of YouTube videos about bicycles.
Guest:That's not the guy you want to learn how to ride a bike from.
Guest:And so it's the same thing with Braille, with canes.
Guest:But you're out there, I'm standing on a street corner in Denver with a blind guy,
Guest:I'm wearing vision occluding sleep shades because that's how the training works like you want to learn the blind skills you got to be totally occluded right and he's like okay do you think it's safe to cross and I got to tell you like that experience of being in Colorado with those blind teachers yeah nothing has made me more comfortable with the Lebanon level of vision I have now and where I'm heading than that that month that I spent with those guys I can't imagine
Marc:entering that world where, you know, the idea of having blackout glasses and then, you know, that moment where you realize, like, my other senses are going to have to step the fuck up.
Marc:Yeah, yeah.
Marc:And that's how a lot of people with no vision live.
Marc:Because you always... When I see someone...
Marc:with a cane who clearly can't see at all, or my assumption is, that my first feeling is like the sensitivity necessary to navigate just by the different vibrations of what you're moving through, but also sound.
Marc:The height, I can't, it's very profound to me.
Marc:It makes me emotional.
Guest:The cognitive load is intense.
Guest:I've talked to people who have guide dogs, and one of the things that people say about why they get a guide dog is that it kind of relieves some of that cognitive load.
Guest:The guide dog, to be clear, some people think they're like, you tell them you want to go to Fifth and Main, and the guide dog's like, got it, let's go.
Guest:Obviously, that's not the case.
Guest:But, you know, like if you're walking down, you know, imagine walking down a block with a cane, that cane's going to hit every single obstacle between you and the corner, right?
Guest:Like you hit the newsstand, you hit the construction cone.
Guest:The guide dog weaves you in and all of that.
Guest:And so you can sort of daydream more.
Guest:And I've heard from blind people who are like, I miss being able to walk and just like space out and think about stuff.
Guest:And with a guide dog, you sort of can a little bit more.
Guest:You still have to be like, okay, there's three more blocks before I got to go left.
Guest:But the cane, like...
Guest:when I was doing cane training like that, I would come back.
Guest:I felt like I took the LSAT, the SATs, like the PA.
Guest:I just like, my brain was sad because you're just like, okay, oh, that's not the turn.
Guest:I got to go a little more.
Guest:What is this that I'm feeling?
Guest:Like, oh, that's not a door.
Guest:That's a wall.
Guest:You know, it's just like your brain is working so hard.
Guest:Oh my God.
Marc:You can't be in your head anymore in a way that's just let it go.
Guest:Yeah.
Guest:Yeah.
Marc:Oh my God.
Guest:I mean, you can, but you got to, well, it's only once you find your chair at the cafe that you can start thinking again.
Yeah.
Marc:So how long have you been legally blind?
Guest:A couple years, probably like five or six years.
Marc:And have you sensed cognitive shifts like evolving or not quite yet because you can still see the moving shapes?
Guest:No, definitely cognitive shifts.
Guest:Yeah.
Guest:You know, I use a screen reader, which is basically just my computer and my phone talk to me.
Guest:Yeah.
Guest:People are always amazed at how fast that voice goes.
Guest:And the thing you have to realize is that when you're reading, if you're just glancing at your computer screen right now, if you were going to read a poem, you might slow down.
Guest:But if you're just glancing through menus and you're going to, where's my email?
Guest:You go fast.
Guest:And so the voice goes fast.
Guest:But it takes your ear.
Guest:You have to train your ear to hear it that best.
Guest:So I've definitely done that.
Guest:And that's a cognitive shift for sure.
Guest:Listening to this very Soviet-sounding robot read my email at 100 miles an hour.
Guest:Right.
Guest:And tactily, there's a shift too.
Guest:I've noticed if I try to look for something, like if I left my pen on this table and I tried to look for it visually, it would just be really frustrating.
Guest:I'm looking around and around and around.
Guest:Whereas if I could just do the finger thing, I'll find it much more quickly.
Guest:I feel self-conscious.
Guest:It's back to the cane thing where like if you were to see me do that, I'm like patting around and you're like, oh, blind man patting on table is so sad.
Guest:But like realistically, like my life is better when I can just get in there tactile.
Guest:Right.
Guest:And that's that's a cognitive shift that I'm in the middle of.
Marc:So it seems like a lot of the thrust of being vocal is to change.
Guest:sighted people's perceptions.
Guest:Definitely.
Guest:I mean, I don't know if you're this way, but, like, so much of the time before I used a cane, I just, like, wished I wore a T-shirt that said, like, I have 10% of my visual field, so give me this much space.
Guest:And, like, there's also these other interesting things I'm thinking about.
Guest:Basically, I wanted my book to just be, like, LED scrolling down my chest.
Guest:And so I think the impulse to write the book, you know, wasn't from this activist thing.
Guest:Like, I want people to understand the experience of blindness.
Guest:Although, of course, like, I'm happy that that happens.
Guest:But really just, like, this, like,
Guest:kind of self-centered feeling of, like, people need to understand what it's like in here right now because it's interesting and hard and weird and funny and, yeah.
Guest:Sure.
Guest:But we're not, like, tragic, pathetic people.
Guest:Right.
Guest:Exactly.
Guest:Yeah, yeah, yeah.
Guest:So, like, how's the Braille going?
Guest:You good?
Guest:It's very slow.
Guest:Yeah.
Guest:It's kind of like if you were to learn German or something, you know, you could play.
Guest:Oh, yeah, yeah, yeah.
Guest:I mean, it's not another language, but...
Guest:You know, reading with your fingers, it's a whole new ballgame.
Guest:But every night, not every night, but, like, I would say five days a week I'm doing it.
Guest:Yeah.
Guest:A little bit of Braille.
Guest:And so, you know, I, like, read The New Yorker.
Guest:I, like, to get through, like, a single talk of the town piece takes me usually, like, two nights.
Guest:But I get there.
Marc:So you can listen quicker.
Marc:Oh, my God, yeah.
Marc:But you can't.
Marc:And you wrote a piece for The New York Times that was interesting about AI.
Marc:Oh, yeah.
Marc:And that, you know, that the—and it was—
Marc:It was a different way of thinking about it because there was this, you know, it directly speaks to the difference between, you know, engaging with a person who is your son.
Marc:Yeah.
Marc:And the convenience of whatever this other thing offers you.
Marc:What was the event of that?
Guest:Yeah.
Guest:So there's this, you know, chat GPT.
Guest:Yeah.
Guest:In addition to being able to talk and chat with it, there's also machine vision.
Guest:So you can give it an image and it will be like, this is a photo of Marc Maron standing with Andy Richter at Disneyland in front of the Magic Castle.
Guest:I didn't know you could see that picture.
Guest:But then you could even do the chat thing and you can say, tell me more about Maron.
Guest:And I'd be like, he's wearing a Pantera shirt and ill-fitting pants.
Guest:You know, they can really do the full thing.
Guest:And for blind people, as you can imagine, this is transformative.
Guest:And so it's in beta right now, but it's rolling out.
Guest:So there's this app that as a blind person, like you can hold it up to your fridge and it's like you've got three quarters of a quart of milk and the expiration date is way past due.
Guest:Oh, wow.
Guest:And so the piece I wrote, you know, was talking about that.
Guest:And, you know, I had this experience recently where we went to a Mexican restaurant for the first time since the pandemic.
Guest:And I was like, oh, shit, I can't read the menu anymore because, you know, it was like up on the boards.
Guest:Right, right.
Guest:And there was this question of like, do I like take a picture and use my phone's, you know, AI to read it, which I can do.
Guest:I don't have that like the super chat GPT thing yet, but there's still things I could do or like find the menu online and then I could.
Guest:blow it up big enough to read or use text-to-speech.
Guest:And I was like, I don't feel like doing any of that.
Marc:But there is actually, there is a few options.
Marc:Oh, totally.
Guest:And I'm delighted that there's, to be clear, my piece was not like, fuck accessibility.
Guest:No, no, yeah, of course, yeah.
Guest:But then just the reality of my experience was, I was like, hey, Lily, remind me what the taco options are again.
Guest:And then my son got all, he piped up, he's 10, and he was like, let me tell him.
Guest:And it ended up being this really lovely exchange between us that was very,
Guest:better than anything that would have happened, I think, whether I was reading it alone with my eyes, if I were able to, or with like the chat GPT thing.
Guest:And so the piece that I wrote was just sort of like, let's not lose sight of the sort of interdependence that
Guest:is a really valuable part of the disabled experience, rather than just this focus on independence, which is really important, but I think often becomes the only thing people talk about.
Guest:Like, I want, as a blind person, to be able to do everything on my own.
Guest:And the experience of being human, and particularly the experience of being disabled, is a lot about that exchange, that social...
Guest:That social experience with any kind of person.
Marc:Yeah.
Marc:Like, you know, that that is the variety of human experience.
Marc:So.
Marc:So.
Marc:Right.
Marc:So like your your kid who you said has only known you as a guy with compromised vision.
Marc:Yeah.
Marc:You know, has made, you know, his adaptation and it's sort of, you know, grown his empathy and it sort of informs the relationship, you know, you have with him.
Marc:Like, you know, he's not, you know, judging like he's not like, oh, God, I'm going to have to read this thing for that yet.
Marc:Yeah.
Marc:But but it is interesting to me that that independence, what it says about independence and about having full independence means that we'd like to have the freedom to make choices about totally keeping other people away from us.
Guest:Yeah.
Guest:Yeah.
Guest:But I mean, the independence is is is exaggerated for everybody.
Guest:Right.
Guest:Like this is something I thought about writing the book.
Guest:Like, OK, I need a cane and a screen reader to to get through my day.
Guest:But you need glasses and shoes and a car and high speed Internet.
Guest:And like if I took those things away from you, you'd be you'd be disabled, too.
Guest:Right.
Guest:Everyone be disabled very quickly.
Guest:Yeah.
Guest:If a few things shut down.
Guest:Yeah.
Guest:Yeah.
Guest:Like the writer Sarah Hendren has a great article in Wired a long time ago called like all technology is assistive technology.
Guest:And it's the same idea.
Guest:Interesting.
Guest:And so I think that those sorts of moves where I'm like I'm having this very specific, very sad, very like, you know, intense experience.
Guest:And then I think if you take a step back and you're like, actually, like this is all unfiled in the same category of like shit everybody deals with in a way.
Guest:It makes it easier in some ways and also more powerful to just feel connected again.
Marc:Yeah.
Marc:So what is the prognosis?
Marc:Are you going to go to black?
Guest:I mean, I've talked to a lot of people with RP, and there's a range.
Guest:So there's a chance that, like, I'm going to be an 80-year-old dude, and I've got, like, four photons left.
Guest:Yeah.
Guest:I could smash my face up against your Gimme Shelter poster and be like, I see a giant G, I see a giant I, and do that.
Guest:Or I know people who are totally black.
Guest:They see nothing also.
Guest:The interesting thing, getting back to your dad and the cane, is at a certain point, what's the point of smashing my face up against your poster?
Guest:That's not doing me any favors.
Guest:It's pride.
Guest:Uh, no, it's not pride.
Guest:It's more just like, it's, it's like efficiency.
Guest:It's like, and what am I getting out of smashing my face up against that poster in the end?
Guest:Like if you, if you were to just say like, if I said, Hey, I'm interested.
Guest:I've never been in Mark's garage.
Guest:Like, tell me, describe it for me.
Guest:And you're like, I got the gimme shelter poster.
Guest:That's way socially and just personally a better experience than me.
Guest:Like smushing my face against your poster.
Marc:I think it's, it's the pride point would be not surrendering.
Yeah.
Marc:Oh, wait, how would I be surrendering?
Marc:No, no.
Marc:I mean, it's like you have these other options, but in your choosing to smash your face up against, why would you be choosing to do that?
Guest:The choice to smash my face is a bad option.
Guest:I think it's clinging to sight and I don't want to clean.
Guest:Yeah.
Guest:Isn't that pride?
Guest:Oh, okay.
Guest:Yeah, yeah, yeah.
Guest:I don't know if it's pride.
Guest:I mean, I think it's fear.
Guest:And I think I got to be careful because there's a lot of blind people who are very much in that clinging place.
Guest:And I have been there and there's still parts of me that are clinging a lot.
Guest:Yeah, sure, sure.
Marc:I guess that's different.
Marc:Is your...
Marc:It is that an aggressive, it's not quite denial, but it's a desire to still have that thing.
Guest:It is denial.
Guest:Yeah.
Guest:Yeah.
Guest:You know, and it's still there, but, but, but, but it like, is it really helping you out?
Guest:Like, what is the point?
Guest:At what point do you just sort of like, all right, give me the walker?
Guest:Exactly.
Guest:Right.
Guest:Right.
Guest:And like, why am I forcing myself to like walk around like this?
Marc:I'm taking this time.
Marc:Yeah.
Guest:And then, yeah, yeah, yeah.
Guest:Yeah.
Guest:And that's the point.
Guest:Like if I tried to do everything visually, if I was like, I'm not blind enough to use a screen reader, I can see, which is true.
Guest:Like if I blow the words up really big on my screen, I don't think I would have been able to finish the book because my eyes fatigue because I'm moving so much more slowly.
Guest:Now that I can listen super fast and like I'm efficient.
Guest:And I imagine your typing is pretty good.
Guest:Yeah.
Guest:Yeah.
Guest:Yeah.
Guest:Touch typing is an important skill for a blind guy for sure.
Marc:Yeah.
Marc:Yeah.
Marc:Well, it was great talking to you, and good job in fleshing this out.
Guest:I'm so glad you chose to have a superiority burger that day and that we got to meet.
Guest:This is amazing.
Marc:Do you feel like we did a thorough job?
Marc:I think so, yeah.
Marc:Good.
Marc:Well, good luck with everything.
Marc:Thank you.
Marc:I don't know.
Marc:Now I'm treating you sort of like, we'll see what happens.
Marc:We won't.
Marc:I'll accept it, yeah.
Marc:All right, man.
Marc:Good talking to you.
Marc:Likewise.
Marc:Well, that was a great human conversation.
Marc:Again, Andrew's book, The Country of the Blind, a memoir at the end of sight, is available now.
Marc:Hang out for a minute, people.
Marc:This week's bonus episode on The Full Marin is a talk about an underappreciated movie, Changing Lanes.
Marc:So he's driving to the courthouse, and he gets into this fender bender with this guy who's also on the way to the courthouse.
Marc:This is Ben Affleck's character.
Marc:But he's delivering the paperwork that is going to move, what is it, the charitable trust people
Marc:Yes, of their client.
Marc:Of a multimillionaire, of their client into the control of the partners of the law firm.
Marc:And what you learned very quickly is that Ben Affleck had a relationship with this guy's granddaughter, the billionaire.
Marc:As a friend, lifelong friend.
Guest:Not a romantic relationship.
Guest:Like this is a kid he used to play with as a child.
Marc:Right.
Marc:So and he's trying to become part.
Marc:He's married into this law firm.
Marc:He's married to the daughter of one of the partners, Amanda Peet.
Marc:Sidney Pollack is her dad.
Marc:Sidney Pollack playing a morally compromised lawyer is probably the best Sidney Pollack.
Guest:It's like, this could be the same guy from Michael Clayton.
Guest:Oh man, this movie has so many tells for you.
Guest:Like, like, you know, if you like see a person and you're like, oh, that's my friend's type.
Guest:Like if this movie, like if you just saw any five minutes of this movie, you'd be like, oh, that's Mark's type.
Guest:This movie, it's in New York.
Guest:It's morally compromised people.
Guest:It's Sidney Pollack playing a shitty boss.
Marc:We've got new bonus episodes twice a week on the full Marin.
Marc:So sign up by clicking the link in the episode description right now, or go to WTF pod.com and click on WTF plus Maria Bamford is back on Monday show.
Marc:So yeah, get ready for that.
Marc:I, I, this is, I didn't use the metronome.
Marc:I didn't, I didn't use it this time.
Marc:I, okay.
Guest:Boomer lives.
Guest:Monkey and La Fonda.
Guest:Cat angels everywhere.
Guest:I just chased that riff.
Guest:I don't... I can't answer for it.
Guest:There was no metronome.
Guest:No nothing.
Guest:It was just sloppy old shit.
Guest:It came together though.