Jules is Always Right
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Hey, everybody. Welcome to Conan O'Brien Needs a Fan. And today's a bit of a different episode. I'll be talking to Jules and Maria. And this will not be my first conversation with this couple. We started talking, I

I might have been well over a year ago, more than that. We started talking because Maria reached out and she had been an NBC page. And through various contacts, she got to me and she said that my husband Jules is suffering from ALS and would I be able to chat? So we started having some chats and

they're a wonderful couple and he's doing an incredible job in this very difficult situation. And then they mentioned, hey, if you're ever in Miami, look us up. And I said, I'm going to be in Miami because we did some podcasts from Miami. Well, you did. Yeah, we did. Oh, that's right. You left us in the dust. Well, I left you behind because apparently you guys can't handle the night scene there. You took us halfway and then just left us in Oklahoma. Yeah, I did. I left you. I had the...

The Learjet land in Oklahoma. The golden Learjet land in Oklahoma. Anyway, met them in person in Miami. They came to both shows, met their son Skyler, and they're just lovely, cool people. And so have gone on to have another conversation or two with them over Zoom. And then the idea came, hey, why don't they...

They seem to be fans or they're doing a really good job pretending. And they are in this very difficult position. Why not chat with them and get their story out? So let's go now. They're in Miami to Jules and Maria. Let's get them in here. Hi, Maria. Hi, Jules. Hey, guys. It's so great to finally meet you all together. Conan, hello again. Hello.

Wow. This is so, let me explain. Hi, guys. Hi, Maria. How are you? Let me explain what's happening. Well, why don't you explain, Maria, what is the system that Jules is using that allows him to use this AI voice? What's it called? So this is, it's an eye gaze device. So he's basically controlling the computer with his eyes. Hi, Sona and Gorley, by the way. Hi. So happy to meet you guys. Hi.

One thing this AI can't figure out is to say your name right. I like that it's mispronounced. I also, it is mimicking. Conan, Conan, there we go. There it is. Don't fix it. No, go back the other way. Don't fix it, Conan. Yeah, I prefer the way. I'm voting to keep it the other way. Can we just change it to Larry? Yeah. Yeah.

Regis Philbin used to call me Conan. But then again, maybe our AI overlords know that you have been pronouncing it wrong all along. Yeah, every time he plugs it in, it always says Conan. Conan, Conan. So I was like, maybe this is time for a name change, Conan. It's a new identity coming. AI has it out for me, as it always has. So now he'll explain how this works. Can you play that one? Yeah.

For normal conversations, I use my Tobii Eye Gaze tablet. It tracks my eyes with infrared cameras and I'm able to navigate the computer like you would with a mouse, just a bit slower. I'll pick each letter or word with my eyes and then it generates the phrase. I can also pick pre-recorded phrases.

That version of my voice was generated by banking my voice back in 2020. I recorded 300 short statements and then a company plugs them into an algorithm that generates a voice I can use anywhere. This is one of the first very sobering things that a person diagnosed with ALS does. It was very surreal. Three years later, we uncorked my banked voice. It sounds like me, but robotic and with no cadence or emotion. What I am actually using right now is an AI cloned voice.

Mm-hmm.

For the AI cloned voice, I will write a sentence or a paragraph like I did for this interview. Press generate and you get a much more human-like voice with breaths, emotion, shifts in cadence and pauses. It's been pretty wild to test this new voice out for the past two months. It's not the greatest at spontaneity because all the computations are done through the cloud. So that adds a few seconds depending on your internet. But it is doable and I hope more people begin to use it.

It's given me back my expression. I'm even working on a five-minute comedy set that I'll be performing soon at a club. It's new challenges like these that keep me motivated, even though I've lost so, so much. I have to say, Jules, we had a conversation the other day, and that's when we had the concept of, hey, let's do a Conan O'Brien Needs a Fan episode. But you were trying out some of your material, and it was really funny. You had a whole stand-up set about the local...

weathermen in Miami who are obsessed with being out in the hurricane to show you that the hurricane is happening. And it was a really funny idea. It was all about, not to give it away because I still want you to do this set, but it was all about how they seemed to get a neurotic thrill out of standing out

And you were talking about how they're getting off on being buffeted around by that. And I was laughing really hard. And then you were asking me through your AI voice about various punch-up ideas. And so we were talking back and forth and I thought, this is the essence of comedy writing. And I know that you've been saddled with this terrible situation, but the idea that you are working on a comedy set,

exercising your talent in humor is just such a beautiful thing. It was a very inspiring moment for me. You've given me many gifts. Talking to both of you has been a gift for me. And so that's why I'm so glad we can be here. I did want to ask a couple of questions, which is, what's something that would surprise someone to know about living with ALS? This is not just a disease that strikes older people. I was 35 when I was diagnosed and

And there are many people with ALS even younger than that. You would think this fact would be obvious with Lou Gehrig being diagnosed during his prime, but the optics are still off. Most people assume it's an old white man disease. It's not. The way some ALS clinics approach patients is as if we have lived our lives already and our kids are grown up and we're done. I have a seven-year-old and my family life was just getting started. My interests haven't changed, my desire to live...

and interact with the world is as lit up as ever. Also, 90% of ALS patients don't show any genetic inheritance, meaning it's sporadic. Something I didn't anticipate was the constant body pain I'm in. It's excruciating. I'll also say that even though this diagnosis is pretty much the shittiest thing ever, the past four years have been filled by experiences that wouldn't have happened otherwise. It is such a devastating disease, and...

It's incredible to me that in our conversations, you're very frank about the...

that you go through and how intense it is, but you're also always so positive and funny. And frankly, you give me a lot of shit, which I find to be... Well, I hate it, by the way, first of all. Oh, get over it, Conan. Oh, man. But you're...

your humanity and your creativity is bursting through. Your body is failing you, but you are there 120%, and it's absolutely beautiful. Again, I say, we've chatted before, and I always get off of our chats, and I come down to the room where my staff is, and I say, I just got the greatest gift from these beautiful people. And that's how it feels.

I'd like to know a little bit about you guys as a couple. How did you and Maria first meet? How did you guys get together? I'll let my wife answer that. Smart. Wow. Artificial intelligence is very intelligent. Very highly intelligent. You better ask my wife. I'll check with the boss. Yes, dear.

And thank you, Conan, for these beautiful words. Landing straight in the heart. We appreciate you deeply. So we met back in May of 2010. It was at a karaoke party for the 30th birthday of a certain young, beautiful lady sitting next to him. So my coworkers threw me a karaoke bag. I'm still thinking. Don't get it.

For my 30th birthday. And a coworker of mine used to go to high school with him, was still his friend, and basically brought him along like, hey, we have this thing going on. Come hang out. And another coworker who was there prior to me getting there, she calls me and she goes, Maria, there's a guy here for you. And I'm like, OK, who do you know him? She's like, I have no idea, but he's cute and I have a feeling. And I'm like, OK.

Okay. So I get there and sure enough, he's cute. And we introduced each other. He introduced himself to me. And then we didn't speak a word for the rest of the night, like three hours, but we danced.

And we danced. And it was like the chemistry between us was just undeniable. At the end of the night, he asked for my number. And then like a year and a half later, we were engaged, then married. So we got married in 2012, December 2012. And then we had Skylar a few years later. And yeah, that's us. Wow. And I've met Skylar.

who is uh and he gives you a lot of too he man he's being trained very well he is appropriately wary of me he's he's got stranger danger every time i need him like what's that yeah so we watched as a family we watched the four travel shows so looking forward to the next batch we saw them with skyla we were like come on let's go because he'd already met you and you know

He loved them. And he had so many highlights and so many things like he was imitating you afterwards. Just all these things. And then when we spoke with Conan a few days ago on Zoom, I called Skylar into the room. I was like, hey, come here so you can say hi to Conan. And I said to Skylar, hey, tell Conan what were some of the highlights of watching a show. And he goes, nothing. And he does it on purpose, the little shit. He went, nothing. He knows. Nothing. Mic drop. Mic drop. Mic drop.

Some trips are better in an Airbnb. It's just true. Like the trip you want to take with extended family where you want to stay close, but not all be sharing one bathroom. That's key for me. Okay, that's why Airbnb is the choice I often want to make. Or, for example, the couple's getaway where you'd rather have your own pool than share one with a bunch of strangers. Ugh. When I'm in a pool with strangers, I start shrieking. Oh.

Okay, that's weird. Or that last minute local getaway when you just really need to get out of the city for the weekend but don't want to deal with the airport. You know, I have to say, I've used Airbnb a couple of times and it always makes me feel like I'm at home even when I'm away. Do you have that? I do too. I mean, I have, you know, I have two small kids who are loud and so when I'm in a hotel, I feel a little uncomfortable. Well, you're loud too. Oh, yes. Okay.

Okay, yeah, we're all allowed. And then in an Airbnb, I just feel much more comfortable traveling. You're not a self-conscious. No. Yeah, and also, you're staying in someone's home. It's got that vibe of comfort, relaxation, normalcy instead of some stuffy hotel. Yeah. I don't want a mint on my pillow. Oh.

Hey, Blay, you use Airbnb, don't you? I do. I love it. And I will say, staying in someone's place really does add a lot. I'm a huge Stephen King fan, and the last Airbnb I stayed in had this book, From a Buick 8, which is one of the few Stephen King books I haven't read. So I actually started reading it in the Airbnb. It was pretty awesome. And you know what I do sometimes when I'm at an Airbnb? I often travel with a picture of myself in a frame. Oh, boy. And I take it out, and I put it up, and it feels like home. Yeah.

I travel with my own framed headshot. Do you leave it there as a gift? No, that's mine. Those things are precious. So if you're booking a trip soon, my number one tip is to check out Airbnb first to find the perfect place to stay because your accommodation really does make all the difference.

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You know what I love, Sona? What? Football season. Hell yeah. Football season is here. All the rituals. I get together with my buddies, my gang. Mm-hmm. My choes. Choes. I don't know what that is. Is that a word? Choes. I think it's chums and bros. You're choes. Oh, yeah, thank you. Yeah. Chums and bros are choes. Oh, okay. You heard it here first.

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I have a question because you're in this, you know, extremely difficult situation and you've been dealt this hand, but you're still a married couple. I know from experience that there are things, no matter what you're going through, couples have shit with each other. They have stuff that one does that drives the other crazy. I'm just curious from each of you, what does the other person do that drives you crazy?

Oh, that's easy. Just saying no initially when she comes up with an idea. It takes a moment for me to think about what she said and then I may reconsider. But that initial no boils her blood and she drives me nuts by not listening to my advice on something. And then it turns out that I was right. That's why I have this recording of her. One sec. What?

One sec. I have a gem here for you. Jules is always right. I should listen to him more often. Oh, my God. So that is my AI cloned voice that he cloned while I was out of town. That's great.

Yes. Right. So Jules can play, Jules is right, I should listen to him more in your voice anytime he wants. Basically. And he does. Question, if you guys ever get into an argument, Jules, are you always speaking in that wonderfully moderated tone that makes you seem so calm and in control? And is that frustrating, Maria? Yeah.

It's taken a while to adapt to it. He can still use his voice somewhat. And I mean, the whole journey of experiencing him losing his voice, like of all the things we've lost, that's the one that I always like. It grips my heart every time. So it's taken a while, obviously, to adapt to communicating with him.

But it's such a wonder to be able to still communicate. But yes, the other night, for example, I have a good example. He played, I was pissed off at him and he played a recording of something for me to help him out, like straighten his fingers or something. And I went, no, not with that tone. Absolutely not. Because I was pissed off. And it was such a chill, like, hey, can you straighten my fingers, please? And I was like, uh-uh, no, no, no, absolutely not. And he's like,

So, yes, it happens all the time. Wow. And yes, we fight. And yes, we're totally like, you know, all the things, all the couple things. Oh, he's he's writing something. Yeah. I'm I'm I'm prepared. Take your time because we can pull this all up. I'll edit it out. What? You're editing this one? No. Oh, never mind. No, that's not me. That's Matt. Matt's going to edit it. You forgot what it is you do. You get tape that matches your shirt. That's what you do. You get edited. Yeah.

All right, he's ready to play it. Here we go. This is my bank voice, so there is a lack of tone. But I have a few quotes from you that I use.

So what you heard now is the banked voice. So that was generated off of those 300 phrases that he recorded back in 2020, right after he was diagnosed. And you can hear the difference between the more robotic, you know, kind of him, but not really, versus the AI cloned voice, which is what he's been using thus far. So he has a bunch of banked phrases. He's going to play a few of our favorites. Okay. What the fuck happened to me?

I'm a good guy. I'm a good guy. What the fuck happened to me? I'm a good guy. It can be used for hot ones and it can also be used for, you know, shitty situations. You're an inspiration. Is that from hot ones? I'm fine. I'm perfectly fucking fine. Are we doing this or not?

Oh, my God. Oh, my God. Yeah. So that scream, Conan scream, is an actual scream that he uses to emote when he wants to scream. It's a fun gag and it's also useful. That's great. When he's frustrated about something, he will literally do the Conan scream. So, yeah.

I'm destroying this marriage. Yeah. It's terrible to think of yet another, there's another woman out there who has to be listening to this bullshit in matrimony. Oh my God. Liza, you need to have a therapy session with Liza. Or no, you need to have like a Sona voice ready to go. Yeah. Do me a favor, guys. Take us through like a typical, you know, day in your life.

What time do you wake up? What's your daily routine? I'd love people to know what your experience is.

My daily routine starts around 8:30 in the morning. My wife removes my nighttime mask, cleans my mouth, and gives me some water. Then she puts my daytime mask on, and then I check emails or missed messages. She'll give me coffee in bed while watching some TV. Around 9:30 Monday through Friday, our aide comes, and we begin with some stretching before he places me in the chair.

He helps me to the bathroom, and then we shower in my shower chair. I'll come to the kitchen to have my morning meds and breakfast shake. After that, I go outside to our backyard to get some sun. I usually then come in and get transferred to my recliner. I'll stay here for a few hours, have a shake and stretch.

And that's a lot for both of you. And Maria, that's a lot for you too. It is. It is.

The aid, how did you find the aid? Because that sounds like a crucial person in your life. Yeah, through a family friend that recommended him. And so we started working with him about a year ago. For the first three years, really, it was, I was like, you know, and I'm still the number one, but it was all me 24-7 with some help here and there. Of course, we have supportive family, but it really, when you get something like this, it's,

it's us it's just him and i figuring everything out truly um getting the aid was amazing so that i you know there's there's support monday through friday for a good chunk of hours and then in the evening i take over again and on the weekends too it's 100 me so i'll you know take him to the bathroom readjust him put him in the recliner do all the things we have a wheelchair a

accessible van so you know we don't go out a whole lot we're cautious about you know energy and all that stuff because it's it's a lot for him to just do life normally but we love going to like Marlins games and if there's you know really good comedy show in town we'll definitely go do that

But for the most part, we just flow here at home and make the most of every day. But yeah, it's hard. It's hard, hard, hard. Yeah, I mean, you're describing it and I still cannot imagine. I don't think anyone can who hasn't been in that position. I'm curious, you mentioned, you know, comedy shows, things like that. What are your...

what are your hobbies what I know you do stand up that you're working on which I'm a big fan of

I think you've got better writing than I do. But what do you do? What brings you joy these days? What do you do for fun? Well, I used to teach before my diagnosis. Now I enjoy doing our podcast together and working on jokes with my good friend. The other thing that I enjoy doing is embarrassing to me because I picture the Golden Girls doing it, birdwatching. I love it, and I can't help it.

That's great. We've become those people. You're those people that birdwatch. Yeah. We garden, we birdwatch. My dad was a birdwatcher and would used to say, who wants to come with me birdwatching? And I would go because no one else would say yes. And I would feel like, well, someone's got to go. And boy, did I hate it. Marshes stink. They really do. All that methane. Oh.

You mentioned the podcast. I want to make sure I get the word out on this. The name of the podcast is The Couple Shift. Starting in 2019, you did it through the pandemic. It originally started, you really started the podcast in,

Because I believe it was I'm going to make sure I get this straight. But it was was it you, Maria, who had left corporate life? Yeah, I got laid off from a corporate job for many years, early 2018. And then I was like, I don't want to do this thing anymore. Let's, you know, shift out of that. He was a teacher at the time.

And then so I started doing my own thing. And eventually he was having a really hard that particular year for him was really excruciating. And looking back on it, it was almost like intuitively we were led to readjust our lives in order to have a better situation for what we would end up experiencing in 2020.

because he chose to step out of the teaching career and basically support me and just work together on creating some new things. And we had lots of plans and goals of ways that, you know, whether we were going to travel, all these things with Skylar, basically like shifting out of the rat race into what do we really want to make out of our lives and not follow in the traditional footsteps.

And then March of 2020 is when we first heard the words like this could be ALS. But thankfully, a year prior to that, we'd had a whole year of really spending time together. It was like really beautifully orchestrated because we, yeah, we love each other's company. We drive each other crazy, but we love each other's company. And so we got that time together. And then in March of 2020, when the first neurologist told us this could be ALS, we drove home in tears and

And I remember when we got home, he said to me, no matter what happens, I want to keep sharing. I want to keep telling our story. I want to keep talking about this. And I was like, absolutely. So the podcast, which we'd been doing since the year prior, we basically shifted it completely to talking about our life and sharing.

as a couple, parenting, all the things. And since then, we've kept shifting to the point where now the very last episode we dropped, it's the first time we tested out with his AI cloned voice. So he edited together his responses and my responses. And so it's a place that gives us a lot of joy and has been such a great

space for us to bond and even work through things. You know what it's like. It's like when you talk things through, just doors open up and we've seen it all. And it's just become this incredible, like chronicle of our lives over the past five years of us,

everything that we've gone through we've been very honest and vulnerable in it we laugh a lot because hello i have this guy to keep me cracking up and um yeah so that's the couple shift and we still record we're planning on recording at least once every week with his ai voice now which is the newest and i want to point out once he got that voice he was like we were reinvigorated to do it again i want to point out to keep doing it that um jules you edit the episodes

And you do it using this technology. So you're editing with your eyes. Is that correct? Yep. I'm just going to say Matt Gorley is always patting himself on the back for editing this podcast. No kidding. And, and, uh, you know, fuck you, man. Fuck me. Fuck me. And I'm seeing here that it says it takes about a half hour to edit a 20 minute episode. I'm not even beating that record. Yeah, that's crazy. That's amazing.

I think what we've learned here, Matt, is that you're fired. Yeah. Jules is hired. We're moving the podcast to Miami. Do you guys need any help? I'm a free agent. And Maria, I prefer you to Sona. Oh, what? I just think she's amazing. You know? I mean, and so, I don't know. I see a whole shift in this podcast now. I don't think that's the Conan shift. And Eduardo, you seem like dead weight, too. Yeah. You know what, Conan? You, too. Get out of here.

here I was waiting for that that's pretty much our time is there anything that you guys wanted to end on is there anything you'd like to say here at the at the end of the episode because this has been by the way extraordinary this has been fantastic and funny and emotional and absolutely lovely and if there's anything else you'd like to say the floor is yours

If there was one thing I would like to say that hasn't been said is that ALS does do one thing positive for my life. It has allowed me to appreciate the simple things. It has taken so much away from me, my wife, and my son. But it's also given me the ability to stop and appreciate this world. That doesn't mean I'm always present. It just means I am always striving to be.

That's beautiful. I'll say it again. I think we've talked numerous times over the last, I don't know if it's been a year, year and a half, but I always walk away feeling like I've been bathed in a golden light of just gratitude and appreciation. And you're both doing an incredible job

It's very empty for me to say, I'm so sorry that you're dealing with this because I don't know what else to say. Words don't account for what you've both been handed, but you've done something really extraordinary with it. And you have my love, my respect, and we're thinking about you guys all the time. And thank you for gracing us on the podcast. It's just...

It's beautiful. Thank you very much. Thank you guys so much, truly. We appreciate you. And if I see any of that Conan merch behind you on eBay, I'm coming after you. I don't know. We might need a caregiver on the weekend, so we might have to pawn this off and get some extra cash. If I see that bobblehead behind you on eBay, I'm coming and I'm coming hard.

All right, you guys, take care and I'll talk to you soon. All right. And thank you for this episode. This is a this is a fantastic. Lots of love to all of you, Conan, and that you guys brighten our days all the time. So we appreciate you deeply. You're part of our part of our lives. You want to say something else? Thank you for everything. Thank you for everything. We love you. Thank you, guys. Thank you. All right. We love you guys. Take care. Bye bye.

Take it away, Jimmy.

Our supervising producer is Aaron Blair and our associate talent producer is Jennifer Samples. Engineering by Eduardo Perez. Additional production support by Mars Melnick. Talent booking by Paula Davis, Gina Batista, and Britt Kahn. You can rate and review this show on Apple Podcasts and you might find your review read on a future episode. Got a question for Conan? Call the Team Coco hotline at 669-587-2847 and leave a message. It too could be featured on a future episode.

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