Offline with Jon Favreau - Right Wing Media Collapse, Trump Trial’s Repost King, and How To Live Like You’re Not Dying

Episode Date: April 21, 2024

We did it folks! Jurors for Trump’s hush money trial are getting to read their resistance tweets to his face as Meta’s crackdown on news is slowly asphyxiating conservative media. Jon and Max celebrate the good news, and then dive into the much more somber topic of dating in the Internet Age. It turns out Gen Z is abandoning dating apps in favor of social media and the “old school” approach of meeting people in person. Then, Max interviews blogger Jenny Livingston about what it’s like to learn you’re going to live 50 more years, thanks to a new drug that’s working miracles for her and many other people with cystic fibrosis. For a closed-captioned version of this episode, click here. For a transcript of this episode, please email [e-mail] and include the name of the podcast.

I had kind of always hoped but didn't know what to imagine or dream of, or it felt maybe a little foolish sometimes to hope for some of these things. Now I can think of those things and look forward to a future with a reasonable expectation that that can happen. So again, my daughter growing old even, or older, right? I used to just hope and hope and hope that I would see her graduate from high school. And now we talk about her going to college all the time. We talk about traveling together. When she's older, we want to travel internationally. And that's so fun. It's fun to imagine being a grandma maybe someday. I'm in grad school currently and pursuing my master's degree in social work, and to think of having a career that I will love. I'm Jon Favreau.

I'm Max Fisher. And you just heard from today's guest, Jenny Livingston. So Max, this week you talked to Jenny about a new miracle treatment that has given a lot of cystic fibrosis patients a chance to live decades longer than previously expected. Jenny is one of those patients. Why did you want to talk to her? So, until recently, most people with cystic fibrosis lived about 35 years. But this new breakthrough has basically overnight pushed that to 85 years, which is huge.

Like a lot of people woke up and learned they'd gotten five decades back. And that, as you can imagine, this is an incredible gift, but also forces you to rethink a lot. And Jenny had already been blogging for years about cystic fibrosis and life with it. And her blog became this incredible chronicle of her reimagining her relationships and priorities and what she wanted from life, which are all that occurred to me. Like what we talk about on the show, to some extent, will be in a very different context of like taking time back from our phones and devices rather than from the horrible genetic disorder. And Jenny kind of shared what she has learned from all this, which is a lot and what we should learn from it. And it was

an amazing conversation. She was fantastic. Yeah. It's just the question of like, if you suddenly realized, if you thought you didn't have much time left and then suddenly you realized you did, what would you do with that extra time? And would you be more intentional about it? Yes. And a lot of her answers are surprising. You know what I would do? Scroll. Read more tweets. Yeah. All the scrolling you've gotten. All right. Well, I'm really looking forward to it. That did come up. Scrolling did come up.

It did come up? Okay. Well, I'm really excited to listen to that. And that conversation will air, as always, after the break. But first, we did it, Max. We kind of did. A recent report from Writing, a right-wing media watchdog, found that online traffic to the Internet's top conservative media outlets

is down by 40% since 2020, including a decline of 57% at The Daily Caller, 76% at Breitbart, 44% at The Daily Wire. I think it was 93% at The Federalist. Yeah, 90 plus percent at The Federalist. Who's funding The Federalist? No one.

That's an internet joke for a couple, like five people. But I'm one of the five, so I had a great time. And a massive 81% at the Drudge Report. So, of course, like most digital media outlets have seen a decline in traffic over the last four years. But just for comparison, the New York Times and CNN declined only about 20%. So did Fox News. It's a decline, but it's not like those other right-wing sites. Longtime media reporter Paul Farhi wrote in The Atlantic that two not like those other right-wing sites. Longtime media reporter

Paul Farhi wrote in The Atlantic that two big reasons for the right-wing traffic collapse are one, a recent Facebook algorithm change that deprioritized news content, and two, the continued fracturing of the right-wing media ecosystem, which is really a story of the entire media ecosystem fracturing as well. But you're the Facebook algorithm expert. What's going on here? So when you told me about this, I was instantly like, wow, yes, this rings extremely true. And this is a really big deal. I think it like it really tracks that.

I think what's happening here is that and we've talked about this before. The big social platforms, especially the ones owned by Meta, have very recently tweaked their algorithms that prioritize what they show you to pull away from news and politics. And when they make these algorithmic tweaks, it really can devastate entire news ecosystems overnight. This happened six or seven years ago with, you remember the whole upworthy Huffost, like BuzzFeed corner of the internet, that had been propped up by Facebook for years. They changed their algorithm, pulled that traffic away and it disappeared. And it turns out what's happening

is that there was a discrete period. We're now learning. When the big social media platforms propped up far-right media that ran from like basically 2015 until like a couple of months ago, like it just ended and they just like pulled the until like a couple of months ago. Like it just ended and they just like pulled the rug out from this entire media ecosystem they kind of created.

And if you're the Federalist, this is a big deal for you. And it propped up right-wing media, not for like a specific reason because it was right-wing or like what about the algorithm was propping up right-wing media versus other kinds of media? So it was a specific set of changes that they wanted to generate. They called it meaningful social interactions. Oh, right. Which basically means what's the content that is going to make you most emotional, which means what's the thing that's going to make you most outraged and afraid and hateful, which is awesome.

Thank you, Mark Zuckerberg. Yeah. And that meant right-wing media. And so what we found is like all of these studies, like what are the algorithms directing people towards not just the US, but like pretty much every country where these platforms operate. It was all pushing towards far-right influencers, far-right news sites, far-right blogs, far-right politicians that started right before the 2016 election. Turned out that wasn't so great. Like, do you remember like Breitbart News? There was this like moment.

Yeah, Breitbart is, you don't hear about them anymore. Exactly, right. Because they were always this creation of the Facebook algorithm where there was this moment overnight in 2016, Facebook changed their algorithm. And Breitbart became, according to this one study that came out after the election, the third most shared news site on all of Facebook for all politics. For a little dog shit site that has no writers

or reporters, but just the algorithm was driving all this traffic to it. That lasted eight years. Now it's over. What's that going to mean for the rest of us? I've always thought the same thing about the daily wire. Cause on Facebook, you'd always see like the top 10 stories, like, you know, half of them, if not more, we're daily wire stories. And I'm like, what is going on there? Right. There was that, yeah, that crowd tangle thing where Kevin Roos used to treat out like every week where they would, like Facebook would, through this tool, would say every day, what are the 10 most shared links? And this is the thing that I always say when people would be like, is social media really biased towards conservatives? And you could show them like,

here's Facebook's own data. And the top most shared links are, it's, you know, usually eight out of those ten, if not all ten out of ten, were going to be Ben Shapiro and Trump posts. And there was even one, some poor bastard actually counted all the shares on Trump posts and Biden posts in the election. And Trump got more shares by a 40 to 1 ratio, even though Biden was more popular up in the polls, which just shows you it's all the algorithm. So, I mean, this was going on for so long. I just took for granted. It's always going to be the case. The big social media platforms are going to boost this like giant far right media ecosystem. And they twisted back the dial. It changed their mind. So now here's my question from a like political strategy perspective or just a general politics perspective, which is, and I'm sure we're going to do more studies on this,

but it does not seem that the decline in right-wing media traffic has corresponded in a decline in right-wing media influence. Yeah. Or at least in attitudes, right? Like radicalization, we've talked about it for months, is still a huge problem. It seems like they are still able to get their message out. And I wonder, what do you think about that?

It's a really tough question. I think the— We probably need a few more years. We need some time to answer. But I mean, I think you're right. The true believers, the MAGA diehards, they're already in a far-right media ecosystem that is self-sustaining. They're checking these blogs. They're following their influencers.

It's like if Facebook disappeared tomorrow, they would still be in there. But like as we have talked about, so much of what matters is the normies experience, the people who don't strongly identify, who don't know who Ben Shapiro is, who just scroll their feed because they're mostly looking for like cute animal pictures. But then every 10th post is some Facebook algorithm push bullshit about trans people or something. Yeah. Like I think that has a big effect on a lot of people. I think that is something we learned in 2016, especially when a lot of people who were not super engaged

were like, this Trump guy seems great. Yeah. And it's early to say, and we don't know where Facebook and the other platforms are going to direct all those people instead of to the Federalist, probably someplace bad. But I do think if they're pulling people out of that ecosystem, I think that could have a really significant effect. Well, and if it doesn't push people to someplace bad, and it also doesn't push people to good sources of information,

legitimate news outlets, it can still be harmful if it pushes people to frivolous AI junk, other crazy shit. Or just like, I do think that in the current political environment we're in, which is a little bit less left-right and more sort of like, you know, pro-democracy and creeping authoritarianism that just continue to make people trust institutions less to like, because there'd be more sources of news now, right?

There's more sort of algorithmic serving up of your own biases, right? And so you're sort of, wherever you're getting your news from, even if it's not Facebook, you're sort of, or if you're not getting your news at all, you're kind of just like, you're not hearing about Joe Biden's accomplishments. You're not thinking about like why you need to sustain democracy. You're probably like, oh, you know, if the price of groceries is high or I'm pissed about something I saw in the news when I just like scrolled a headline, then maybe I'm not going to vote. You know, I think that the biggest challenge right now is finding and communicating with people who have tuned out the news, which I feel like is a, and again, I need data on this, but it feels like it's a growing part of the population and that there are more people tuning out since 2020.

And those people, whatever they do in 24 is going to be the big question. Do they stay home? Do they vote third party? Like, do they go to Trump? Or are we able to reach them and sort of like bring them into this coalition that has succeeded since 2016? That's a really good point. The every indication we have is that the platforms are not directing people away from far right news to credible news sources. They are directing them less and less to credible news sources. Where they're directing them is to influencers because those are people on the platforms because the people at these social media companies want to keep us on the platforms.

And those people... I know. Well, we've talked about this a lot. Again, we're the only influencers you can trust. There are good influencers. There are a lot of people who are native to these platforms who do great work. The structure of the influencer economy,

unfortunately, does incentivize you to build your kind of brand around. You can't trust the mainstream media. You can only trust me, which is bad as a whole, even if individual influences are good because it tells so many people, tune out the news, tune out institutions, don't listen to authority figures. And I don't know, there's just some economic data came out that I was sharing in the Slack this morning that rents are stabilizing for the first time in like a generation. That's really cool. You're not going to hear about that unless you're going to- You don't think there's going to be a viral TikTok on that? I don't think there's going to be. You don't think so? Right, because it doesn't speak to the TikTok incentive of outrage, distrust institutions,

you know, whatever. But- One bit of data that's reminding me of is a lot of the polling is showing that Biden is doing slightly better with older voters. I saw that. You know, and it's like, again, it could be a function of polling and non-response bias. And so we got to, it's got to bear out. But if he is, you know,

maybe some of the boomers aren't so much going down rabbit holes on Facebook. It's just it's a slightly less toxic rabbit hole, maybe. And then young people who he's not doing as well with for various reasons, right? Like we've talked about Gaza, but there's also a whole host of other reasons. And again, people who are not paying as close attention to the news tend to be younger, tend to be people who are more lower information. So interesting. All right, in other news,

Americans are sick of swiping. That's according to Laura Kelly at The Atlantic, who argues that the era of the dating app is coming to an end. She knows that Tinder, Hinge, and Bumble are finally seeing a decline in users and that young singles are fed up with online dating. Apparently, Gen Z is now gravitating towards

old-fashioned ways of meeting people in person. Just to let people know you were doing air quotes. I was doing air quotes. Through friends, speed dating, and matchmaking, and that the dating apps' new subscription services have made finding people online far more difficult for young people with less disposable income. I did like, there's another Atlantic piece about this, about the return of the meet cute and like

people like Gen Z is like looking to like meet up again and some of the apps, the dating apps are now trying to reverse the whole thing so that they are sponsoring like in-person meetups. They've tried this occasionally for years that'll be like go to the hinge local and I don't think it's not.

I don't think it's a nice idea. Yeah. All right. So I miss the dating apps era because I met Emily in DC at a bar. In 1902? In 2011, 2011. Oh, okay. But I have seen a lot of friends use them to great success and great frustration.

Are they really that bad? So I joined the dating apps for the first time in 2011 and I was trying to do the math of how much time I spent on them. It was off and on probably like six years, maybe. So a lot. And I honestly think they are not so bad in and of themselves. I think a lot of people's complaints about the dating apps are really complaints they have about dating because those things have become synonymous. So like if you're on a dating app, you do spend a lot of time swiping past pages of people saying that they love tacos and doggos.

And like that is really a bummer when you have to swipe 30 of those a day. But like that is a problem with dating, which is that a lot of people are just like, sorry, kind of boring. When you sit down with them for two hours at drinks or whatever. But it's like that's not Tinder's fault. I was going to say I had plenty of those experiences with no dating apps. Right before, I remember right before I met Emily, I was like, if I have to do one more fucking date with someone that someone set me up with and that it's like a bust and then you're sitting there for like an hour and a half and you're like, well, what do I do

here? Right. Dating is really hard and we are settling down later in life, which means we are spending much longer periods of our life dating. And I think that is not a dating app problem. But when you come back from that shitty first date that was so boring, you had nothing to talk about. And you pull up Tinder again. I think it's easy to be like, it's the dating apps fault. I do think that this is part of a like broader, obviously backlash to like, we're living our lives on social media apps. And that sucks. I do think one telling

data point here is that while this, I'm sure there is something to this trend of like young people are trying to meet in person again. The data suggests that actually most young adults are still meeting people on social media apps. They're just switching from dating apps to straight up social apps. Like it's an Instagram and a Twitter DM slide now. And those numbers are actually...

Again, it seems like Emma mentioned this when we were talking about this, that like you can know more about the person from their social media feed than you can necessarily just about the Tinder profile. That's true. And you can have some like back and forth. So it's like you're getting some elements

of real life dating as opposed to just like straight up like appifying it. I do think there is a specific dating app backlash here which is like, I know I fucking sound like a Goldman Sachs trader when every time something comes up in here, I'm like, oh, it's because of interest rates. It's because of interest rates. The reason

Tinder sucks now is because of interest rates because rates were low. Jerome Powell has completely fucked the dating app scene. He has. That's correct. That's the title for this episode.

Well, it's actually a good title. Boy, is that people are going to click that. The Fed? We know our listeners. So what happened is that forever and ever dating apps were free to use, right? Because interest rates were at zero. So like Tinder, Hinge, whatever could always get more venture capital money. That's what they were running the business off of was VC money because they were in this race to get all the users.

We talked about how that's how the social media apps worked for a long time. Interest rates went up. There's no more VC capital. All of a sudden, if you run Hinge, you're not getting your money from Kleiner Perkins. You have to actually make an honest revenue off of your customers. So that is when they started making the free experience on the social apps deliberately shitty to push you into paid subscriptions. I never had a problem with that because I was like, this is the most important decision in my life. Obviously, I'm going to spend $20 a month on it. Are you crazy?

But a lot of people did not want to. I thought this was a typo in our prep, and I looked at the article in The Atlantic. Maybe it's a typo there. Tinder has a new premium subscription level that is $499 a month. That's not. What? I should say that's not there. I was not on Tinder, just to clarify. That's a meme subscription that they introduced, I think, basically to get attention and to make it be like, oh, okay, well, the main subscription model is $15 or $20 or whatever it is.

But if you pay that, you will find true love immediately. I fucking hope so. It is like the commodification of everything else, though, where it's like, you know, they don't – I mean, these apps can only make money if you keep swiping and keep staying on the app. If you meet someone, get off the app. They're not making money. I have heard people make this like, oh, they don't want you to meet someone because they want you to stay on the app and keep –

I never totally bought that because I think they know a lot of their business is word of mouth. And if you hear a friend of someone yeah even if you go to a fucking wedding and it's like we met on tinder that's 100 people are signing up right there yeah i do think it's um the piece that talked about how gen z wants to like start meeting people in person but it was like they don't know how to go up to people at a bar yeah and they don't know how to like flirt i don't know how to go up to people it It sounds scary. It was scary. It's a stranger that's weird. It was. Yeah.

I mean, I, Emily, my friends started talking to her first because I was always terrible at going to girls at bars. Terrible. Did you, was your friend talking to her to introduce you? Was it like, hey, my pal over there? It was Tommy. Was it really? Tommy was talking to her.

I didn't know that. Yeah. Oh, that's fun. And was like joking around about something. And then I started talking to her. But like the connection there was she was on Capitol Hill. I was at the White House. We had a political thing to talk about.

I do think like a cold going up to a stranger. A total stranger. And just being and like just dropping a couple lines. I dug your vibe. I was never good at that. I'm so skeptical that that ever actually happened. Do you know anyone who met there?

Really? Yeah. Wow. They are braver than I am. Although, one of my friends who's probably the best at that and like literally

would go up to any girl at any bar and just like strike up a conversation and be very funny and charming met his wife that he's still with to this day on a dating app.

Really? So, one thing that I actually really appreciate about the dating apps and that I think is actually a value that we have kind of taken for granted as we've gotten much smarter around like consent and social boundaries is that dating apps really cordon off like, is this interaction one where we are flirting with each other and thinking about dating each other and then interactions that are not on those apps. So like, okay, we're not, that's not what we're doing. So I feel like there's much fewer

like creepy conversations now with like people at work or like friends of friends where you're like trying to feel out, is this a date or not? Is the romantic interest here? Because it's like, okay, that is activity that takes place on these apps that are separate from everything else.

That's interesting. That's interesting. All right, well, keep swiping, everyone. Do you miss that? Is there part of you that wishes you'd had like the experience of being on a dating app? Not really, because I had enough friends who were on them. And so I was like, you know, as they were swiping, I was like, I've seen it. Yeah.

You know, and I'm like, it seems funny. For me, it was entertaining to like watch them do it, you know? But I was like, I think I'm fine, actually. I think there was something really valuable about it. Like, I still have a lot of friends who I made on the dating apps because they're just like, there's something about, like, it's hard to connect with people now. Like've talked a lot about this like the loss of third spaces the loss of this like in-person interactions and there's something about this app that like crashes you in with strangers and it's like trying to see if you have a connection or not that's like that's what making friends is too well if i had moved to la single i don't know of course i would need the dating you know what i'm saying like i think

living in dc for so so long and being in politics, it was like, well, that was easier to meet people. Being in D.C. in your 20s is a dating app anyway. That's what I'm saying. Like, didn't miss it in D.C. Would have missed it in L.A. for sure. I will say coming to L.A. as an East Coast D.C. person and then getting on the dating apps is like a superpower

because everybody is like, you know World Capitals. You've been outside of Southern California. People are very impressed with it. You know who's president? That's right. Anyway, sorry, LA. And finally, how would you like to read your most embarrassing tweets aloud in a court of law? This has been incredible to watch. That's the pleasant experience dozens of potential Trump jurors have this week when the most infamous man in the world is on trial in the era of being extremely online. Lawyers for both sides scoured the social media accounts of potential jurors to find evidence of bias for and against the defendant. The potential jurors were then questioned about the posts, which included such gems as Trump invites the

Thai boys to the White House and the boys request to return to their cave. Okay, that one is a banger. And Austin just let us know that was a grandmother. It's amazing. How can I follow her on her platforms? Grandma crushed that joke. Also an AI generated video of Trump saying I'm dumb as fuck. Again, I think like more creativity on that one. The thing you have to remember is that it's not just these are funny memes. These are imagine sitting in a jury box and a lawyer is reading these deadpan, very expensive lawyer reading these memes out while a judge is staring at you. And so is Donald Trump.

That's right. Donald Trump is there. That part sounds amazing. I would love that. And a bunch Donald Trump. That's right. Donald Trump is there. That part sounds amazing. I would love that. And a bunch of reporters, like, I'm writing, like,

tweeting it out. They're tweeting it out. Okay, come on. How much would you pay to be in a courtroom where Donald Trump has to listen to a lawyer read your tweets about him

to all of the media? I mean, I guess it's kind of your job anyway. Well, that's kind of what you do. Look, I was sitting behind him

at the Correspondents Center in 2011 when Obama did all the jokes. I was like, we got him. He's so mad. We'll never hear from him again. Womp womp. And here we are. There was also a 2016 meme showing Trump and then President Barack Obama side by side, captioned, I don't think this is what they meant by orange is the new black.

Resistance cringe. Yeah, no shit. That's a 2016 meme. side captioned i don't think this is what they meant by orange is the new black resistance cringe yeah we got yeah no shit that's a 2016 meme we got some facebook dads in that courtroom one juror explained all of his all of his posts by calling himself a repost king i love that we stand a repost we repost kings rise up as a repost king we wouldost kings rise up. As a repost king, we would be great on a jury. We know how to collaborate. We're consensus builders. We're good listeners. I love a repost king.

And then another woman was forced to read her anti-Trump post aloud. I think she called him racist. And while Trump was looking at her, and then she said, she stopped in the middle and she goes, yikes, that sounds bad. Sorry, guys. Max, here's my question which of your tweets would you least like to read in court wow well i will certainly not be reading it on this podcast to all of our podcast listeners i actually at one point i when twitter was like there was something bad happening with her and everybody was oh they were like changing their API.

And you could no longer do this. For a while, you could download all your old tweets if you had a blue check. And they got rid of that. And I downloaded all my own tweets. And I was like, I should go through and find like any mean ones that I have that I regret. And it turns out it's all of them. Oh, I did that. I deleted all and I saved them first.

I don't know where they are. But I deleted all my pre-2020 first that's when I did it around so like everything from and also from 2020 on I was like okay I've I know I've grown up enough but like from 13 to 20 no 13 to 20 I'm pretty glad they're all gone although I'm sure they're not somewhere but yeah when I joined the times I was like I should search every New York Times reporter I've ever dunked on on Twitter and delete all those tweets. And there were quite a few. I'm so sorry to Tom Friedman. I do think it was interesting because, and, you know, right before we recorded, they're still looking for alternates.

It's Friday. And they said that one woman was, like, crying because of, like, some of the questions. Like, it is pretty tough. And I think it could veer into dangerous pretty easily yeah like a lot of the information about the jurors is getting out there and it's i think it's just another example of like the internet has given us way too much information about each other right way more than our institutions were built to handle yeah and so you have this like manhattan courtroom and they're just doing a trial

and like obviously the fact that Donald Trump is on trial is a big part of it. This has heightened all of it. But the fact that there's all this information out there about every juror

and everything they've ever said about this guy and then as they're rereading it then that's broadcast to everyone else. Right. You get fucking Jesse Waters in Fox News

like talking about some of the jurors and then like one of them was excused because really yeah this woman who was like she's like people started guessing it might be me and i'm worried about it and i have to leave and so then she was excused so yeah it's yeah this is going to be a whole i have i have seen some people worried about like the doxability of this and you're right It does feel like a first taste of what our like justice system is going to be like when we all live in this fishbowl where like every thought that we have ever shared. And some people are getting questions about their spouses' posts. It's like we got our repost king up there is being questioned about his repost.

It really is like this idea that like, you know, I've sent thousands of tweets over the course of my life. And like, yeah, I deleted most of them, but I don't know, you could probably find some of them. And the idea that you could be held legally responsible or just like made to stand up in a courtroom and read them out loud in a way that will have consequences for you. And by the way, for the American justice system

and American democracy is like really not something that we have started to adjust to no and on the flip side also pretty amazing that there are several jurors some of them who were seated who were like i don't i'm not on social media i don't pay attention to the news i don't really have an opinion of donald trump what i'm not sure that's a lot of people i'm not sure i believe all of those people yeah but that plausible deniability. I think there's more. We're too online.

Like, we're so online. I don't know. I think there's some people who are like. I'm sure that that's true. But at the same time, to your point about, like, we're adjusting to this new world where it's, like, everything you've ever said and done is now transparent and searchable and findable. I do think that we have, like, as a society, you function on a level of plausible deniability all the time. And it's like, I mean, just think about, well, like, when you meet someone and, like, a controversial topic comes up and you're like, oh, gosh, I don't really follow

the Israeli-Palestinian conflict, you know? And it's like, well, it can search your fucking tweets for what you said about Gaza. Yeah. Or, you know, it sounds bad. Yeah, right. It's just like, there's a social kind of lubricant that comes from, you can kind of say like, oh, I don't follow that. And it turns out maybe that was a functioning of the justice system, too. And then you go home and like fire up the laptop and start in the QAnon chat room. That's where we're getting all jurors. All right. They did ask that question, the way q anon proud boys do you have any association with oh did you see that they were at one point they were going through somebody's follows no yes they were they were looking at disqualifying

jurors basically which is how we got i'm supposed to get that the first courtroom mention of mueller she wrote because someone followed this like resistance podcast that i have never listened to really you're not you're not i'm not i'm not a muller yeah that's right muller she ran on mueller um yeah that got read out in the courtroom follows is too much it's too much um all right before we go some quick housekeeping it's 2024 we're facing no shit we're facing another election with unprecedented stakes if you're not sure how to make an impact vote save Save America's anxiety relief program will route your recurring donations directly to grassroots organizations and down-ballot

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plus a lot of other organizations who are mobilizing around voter registration this year. Let's keep the momentum going. Head to votesaveamerica.com to set up a recurring donation today. Paid keep the momentum going. Head to votesaveamerica.com to set up a recurring donation today. Paid for by Vote to Save America, votesaveamerica.com, not authorized by any candidate or candidates committee. Also, why would voters view Trump's time in office more favorably now than when he left?

Dan digs into this question and more on the newest episode of Crooked's subscriber exclusive series, Polar Coaster, out tomorrow. Be sure to join friends of the pod for access, crooked.com slash friends. And I am really excited about my new series with Aaron Ryan, How We Got Here,

where every week we explore a big question behind the week's headlines and tell a story that answers that question. Our question this week, why has Tesla gone from one of the world's most successful businesses worth over a trillion dollars to now spiraling, even as it remains dominant in the electric car market that is only growing? Check out new episodes of How We Got Here every Saturday on the What A Day podcast

feed. All right, after the break, Max talks to Jenny Livingston on what happens to life when you finally find yourself with more of it. Hey, everyone. So, Jenny Livingston was diagnosed with cystic fibrosis when she was a baby. Cystic fibrosis is a genetic disorder, and it's brutal. Your body produces mucus that is extremely thick and heavy. This blocks up your lungs and other organs. Patients tend to cycle in and out of long, painful hospitalizations,

and they tend to die young. Jenny's eldest sister, Shannon, died of cystic fibrosis when she was just 14, and Jenny lived her life expecting that she would never make it to 30. Today, Jenny is 36. Thanks to a recent medical breakthrough known as Trikafta, she and many cystic fibrosis patients now expect to live many decades longer, well into an adulthood, and even an old age they never thought they'd see. Jenny, welcome to Offline. Thank you so much. It's surprising and an honor to be here. Surprise honors are the best honors. I wanted to talk because I was moved by your story of living with cystic fibrosis and about everything that's changed for you with Trikafta. And after I read the Atlantic story, I actually stayed up really

late reading your blog posts. And you write so beautifully about relationships and aging and finding purpose in ways that are, of course, specific to your experience, but also universal in the sense that these are all things that we kind of deal with and think about and that we certainly talk a lot about on the show. So I'm really excited to have you with us. Oh my gosh, thank you. That's very kind. Thank you so much. Well, let's start with your story. So there's one in particular that you told The Atlantic about one of the moments when you first noticed how Trikafta, this new treatment for cystic fibrosis, was changing things for you. It was January 2020. You've been taking the medication for a couple of months. It's brand new. And a snowstorm hit and you went with your family to

a nearby sledding hill. Can you tell us what happened next? Yeah, that's something that living in Utah, my family has done a lot, you know, frequently through the winters. We have a lot of snow. We try to take advantage of that. We go sledding often as like an extended family. And it's not something I have ever really loved to do. I never really had the health to participate. So I would be cold and kind of bored and not enjoying what was happening. And this time, my nephew was at the top of this hill that, as Sarah mentions in that article, it's really not that impressive to see it. It's not like a big mountain. It's a hill. My nephew just called to me, you know, Jenny, come sled with me. And without thinking,

I just turned and kind of jogged up the hill to meet him. And we sled down together. And I went to Randy, my partner, and Morgan, my daughter, and I said, I just ran up that hill. This is not something that I do. I don't climb hills. I don't run. And I just did that. And I'm going to do it again. And so I did. And it hit me pretty immediately. But that was just brand new. My daughter at the time was, I think, 10 years old. And I had not, up to that point in her life, been able to run and play with her. So to be running up hills now was just so shocking. And that really was my big aha moment that something had really changed. And yeah, I ran up that hill or at least walked,

climbed the hill so many times that day. And it was just shocking. I sat on the hill and cried for quite a while just thinking things were really changing. And that was really my first clue about how much they would change. How did your daughter Morgan react? Because if she was 10, she was still quite young. Yeah, yeah. Young, but also old enough to recognize that difference. She'd had a lot of difficult times, and I would even say trauma related to us being separated and all of my hospital stays. She was very excited that day on the hill and I was putting her into bed that night. She was crying and I said, honey, what's wrong? And she just said through her tears, mom, you climbed a hill, you ran up the hill. So that's been this whole other part to this story

is having my daughter who has been fully aware of how big these changes are and kind of processing all of that alongside me. And it's just been really, really beautiful. Do you feel like you're more aware of those changes, seeing them through her eyes? You're probably pretty aware of them anyway. I'm quite aware, yeah. But it gives it just a depth maybe that it wouldn't have otherwise

to know what this means for her and to be able to talk about those things and celebrate those things together for, I mean, I would say probably two years after starting Trikafta, my family, we had like a little celebratory dance when something like that would happen. When I ran up a hill or I went swimming or started riding bikes with my kid. We would just be like, try Kafta and like dance, you know? Yeah, we have fewer of those moments, I think more just because we've forgotten that's what we did. Not because there's a lack of realizing that those moments are still happening four years in. What was the last one that you can remember? So actually, just after the Atlantic article was

published, I started to have more CF symptoms than I've had in four years. And classic kind of exacerbation type symptoms. I was feeling kind of sick. My lungs weren't doing very well. That hallmark CF cough had started to kind of come back. I had CF clinic thinking that my lung function would be down. I didn't feel sick enough to hospital stay, but thought for sure we would start maybe oral antibiotics or some course of treatment. And I went to clinic and my lung function was actually even higher than it had been. And I was clearly having some type of exacerbation, but my body was handling it fine. I mean, quite well. So here I am having kind of this return of symptoms that was a little scary because I know there will be a time that I

go back to the hospital. I know that CF is still part of my life that I will always deal with. I don't think that I'm just never going back to the hospital, but to start to kind of think, is this the time that that will happen? Is this when I'm going to have to like get used to that again? And then to go to clinic and realize, oh, actually, I'm doing way better than I thought I was. And my lungs are handling this fine because of Trikafta, like Trikafta. It was really weird. And it was interesting also to be like going through that in days after this article was published. So I'm getting messages from my friends in the CF community or people that had read the article and just wanted to reach out and, you know, maybe share what that meant to them as

I'm like strapped into my vest doing extra treatments, coughing up a storm, like talking about how great my health has been. It was really just this interesting dichotomy there. I guess you're still four years in, you're still learning what life is going to be like now. Absolutely. Well, was there a moment when you started to realize that Trikafta, in addition to changing your day-to-day life in all these ways, meant that you could expect to live probably many years longer than you thought that you would. Yeah. Yeah. And that was something that set in more slowly, like big moment of like, oh, I now I'm going to most likely live a lot longer. It was a gradual realization and it was met with,

you would maybe assume that it's just pure excitement, but it actually had a lot of other components and a lot of emotional themes. There was a lot of anxiety that came with that. And even some grief related to letting go of this life and this future that I had planned on, even though that future was not necessarily a very happy one. It's all I had known. And so that big, big change, it came with a lot of really mixed feelings. It was this, I was having an existential crisis related to this really, really good news. Right. Well, you write about that, comparing that feeling to a midlife crisis,

which really struck me because it is something that, again, is so particular to your experience, but to universalize it like that, I thought was really interesting. Yeah. And I think there was part of me that I am not middle-aged as we conceptualize that, but for CF, you know, like midlife could be 20, you know, like it felt kind of appropriate for that time in my life as well in the context of like my CF journey. It's just been a wild ride. You mentioned that that kind of came on gradually. When would it come to you? Were there specific moments or circumstances where you would start to be confronted with that, this idea that you were going to have so many more years than you thought? At night, I would wake up at night.

Really? Uh-huh. Sometimes kind of panicking. Again, I think not what many people would think that would look like. This realization came with a lot of kind of difficult emotions. And I would think, yeah, in the day, like, oh, these great things are happening. We're having our little Trikafta celebratory dances. And then at night, I would think, I have not prepared myself for this. I don't know what that looks like. I've never thought about retirement. I've never thought about getting old. I've never planned for a future. I have hoped for that. I have fought so hard for that, but I've never

realistically planned for that. And to realize that I needed to start doing that was hard. Is it planning for the kinds of nuts and bolts, logistics of retirement funds and health plans, or is it something bigger than that? I think it's mostly that. Really? How beautiful it is to have these years kind of given to me. And it's interesting, as you're asking me this, I have a million thoughts. I'm living this experience and still not really sure how I'm feeling about this experience.

So it's really, really beautiful and I'm so happy and I'm so grateful. And also it's scary because of those things. I think kind of the nuts and bolts, as you described it, like, yeah, retirement, a career. I worked for my teenage years and young adult years, but never planned on a career, never really thought what would I really like to do if given the opportunity. I was working to survive and then couldn't work for a very long time.

So it just feels like I'm now kind of entering this world and looking at these decisions that many people consider and make and they have this path kind of that they are carving for themselves much earlier in life. And I'm starting that now. It feels like I'm a little behind. But yeah, we used to joke, my sister and I or friends of mine that have CF in kind of a dark way. But I think that's I'm a big fan of dark humor. It's helpful. But, you know, we would say, yeah, that's kind of the perk of having CF. We don't have to worry about retirement or we don't have to worry about it.

OK, I don't even know what that means, but I don't have to because I have CF. Like it just, you know, kind of a way to cope with that was to joke that there was a little bit of truth in that. Like I didn't think about that ever. In one of your posts, you wrote that you once told your sister who also has CF to no longer actively be dying kind of sucks. And I, that really struck me. Yeah. That is not something that I would, I mean, I, to hear you explain it and especially to read since so much of your writing, you talk about, of course, all the really terrible burdens of cystic fibrosis, but that it also kind of forced you to really focus and live in the moment in a way that is hard for anybody. As you've been kind of thinking more about, you have to think about the future now and all these practical things. Do you feel that you're still as good as you want to be at focusing on the present i think i'm still really good at it maybe not as good as i want to be it is easier to get caught up in kind of the inconsequential things and you're not just surviving when you are not putting every ounce of yourself into like getting to the next day to have had such a close relationship with death through the loss of my sister and my friends contemplating my own death.

I think really it gives someone the opportunity to just really, really embrace life. And I have done that so good. And I don't want to stop. I don't want to forget what that felt like to be in the trenches. And now I have more opportunity and more freedom to kind of explore life and to be bothered by the small things. And I don't want to forget, you came from. I just really love that perspective that I have. When I recently did my pulmonary function test and learned that my lung function

was even higher, I cried in front of the PFT technician. And I don't want to stop that. I want to continue to be so grateful for everything that I'm crying in front of strangers, like just that beauty of all of these ups and downs. I want to hold up to that. So I do intentionally kind of practice that still. What does that intention look like? Like, what do you do to kind of help keep yourself focused on that? This is kind of a funny thing. I literally have an app on my phone that five times a day sends me a text message saying, remember, you're going to die. And then you open it up and it has this quote. And sometimes it's kind of silly. Sometimes the quotes are like beautiful pieces of poetry about life and death. Sometimes it's comical.

Sometimes it's very dark, but yeah, it's an app, but five times a day, randomly, we'll just be like, bing, you're going to die.

It's we croak like C O I K. And it has a little frog on it. I love it. And it's, it's funny. Sometimes it actually really works. I'll be maybe like having an argument with my partner, something that totally doesn't matter. And I'll get a text that is like, bing, reminder, you're going to die. And I'm like, oh my gosh, we're all going to die. And this doesn't matter. That's part of it. I also think that it doesn't take much to remind myself of that. This is something I practice intentionally,

but I also think it's just kind of inherently who I am or who I have become. And so a little reminder, just a deep breath even and like, this is a really beautiful moment. Like cherish this moment or this totally doesn't matter. Let it go. You know, I think I have become pretty good at doing that naturally, but sometimes a text message from an app reminding you you're going to die can also be a good way to like come back down to earth. I'm laughing, I think in psychological self-defense because I think if I got that text message, I would know that's true. But I think that I would spiral a little bit. Or is that the idea? Maybe that's the idea. Maybe I find such a comfort in it. And I don't

know if that's because of CF and all of these experiences or maybe a little bit part of who I am as well. My family has always kind of teased me about being a little morbid, or I've taken a real interest in kind of trying to normalize talk of those really hard things. I've been the person to show up to, you know, big family functions with, like, my advanced directives on paper and, you know, telling my family, now, since we're gathered here together anyway, I would like to talk about my wishes for End of Life.

I've kind of always been that way. I'm sure much of that is because of this life I've lived with CF. But there's something in me that's just a little, maybe darker and different than the rest of my family. They just have found that so odd always. Have you brought them around at all? Are they joking and laughing about end of life now too?

Sometimes. Sometimes it's the real conversations that are hard for them. Yeah, sure. You know, my dad, Sarah, wrote in this Atlantic article about my dad having a massive heart attack last fall and really looking at his own life and how close he came to death. And he made a lot of jokes during that time, but I was really trying to have them the serious conversations about, you know, his end of life wishes or do they have a trust? And that's still really hard for them. And I think that's hard for most people. For sure. To recognize and really embrace the idea that that's going to happen to all of us. Yeah. It can, yeah, cause that spiral. It's,

it's uncomfortable. It's difficult to sit with. I, I get that. Um, that's kind of more the camp that my whole family is still in. Yeah. Sometimes we joke about scary things to deflate the tension so we can look at them head on. And sometimes we joke to deflect, of course. But how lucky your family is to have you there to kind of help push them towards thinking about the things that are hard to think about, but that we have to. We have, and maybe it also helps to. Yeah. I very much think that it's helpful to think about those things and practical to think about them. Well, it's so striking because I feel like as we're talking, you were telling me that you have really been able to focus your mind and think about really hard things like dying,

end of life, what that means for you, what that means for your family members, but that thinking about adding life has been hard and has been scary. And that's really surprising to me. Yeah, me too. I still don't understand all of that. What did you expect the process was going to be like? And has it been, how has it differed from kind of what you expected of like acclimating to this new this new kind of world the new normal for you um i don't think i had any expectation because how could you i guess yeah yeah it was just not ever in the cards it wasn't something that there was like a map for i I had seen the opposite play out. I had seen what CF looks like. And I had seen what was my future. And that's sometimes hard to describe to people as well. It wasn't like, oh, maybe I also will experience that. Maybe I also will die young. Maybe I also will die in this

frequently like long, drawn out process of losing lung function and experiencing respiratory failure. I knew that. I knew that as well as I know my name or that the sky is blue. That is what happens for people with CF. And so that was always looming in the future, which did kind of make the now so beautiful, even when it was hard. At least I'm here, and I found so much beauty in the day-to-day, even when it was extremely difficult. And I had never thought of what it might look like with something like Trikafta because it just, it wasn't even in my paradigm. That didn't exist. There was a lot of hope that something would come along. From the time I was a child, there was that hope and there was that real push in the medical community. And we had been told so many times, in five more years,

there'll be a cure. In five years from now, there will be a cure. Well, in five years actually from now, and that kind of started to like ring pretty hollow, but there was always a hope that something would change, something would come along. But I didn't know what that would be. I didn't even know how to imagine what that would look like. But I knew what the opposite of that looked like. So yeah, to come in with no blueprint at all, I didn't really have expectations. I don't know that any of us did. I don't even think my doctors did. It's been so game-changing and so new for those of us who are doing well on Trikafta. I don't want to speak for everybody, but yeah, for a large portion of us, it has just been something we couldn't have ever

dreamed of. Yeah. As you've acclimated to this kind of new, not just present for yourself, but new future, are there things that you kind of enjoy, I don't know, daydreaming about or imagining for what might kind of be in front of you? Yeah. Yeah. I do love that, where I had kind of always hoped but didn't know what to imagine or dream of, or it felt maybe a little foolish sometimes to hope for some of these things. Now I can think of those things and look forward to a future with a reasonable expectation that that can happen. And so, again, my daughter growing old even or older, right? I used to just hope and hope and hope that I would see her graduate from high school. And now we talk about her going to college all the time. We talk about traveling together. When she's older, we want to travel internationally.

And that's so fun. It's fun to imagine being a grandma maybe someday. I'm in grad school currently and pursuing my master's degree in social work. And to think of having a career that I will love, this is work that I love so much. And so to think of at one point, never thinking I wanted a career or believing that I could have one to now like actively taking the steps to make that happen. That's amazing. And I love to think of what that could look like and the type of work that I could do like here in my community that I think could bring about some really beautiful change. Like it's so cool. And it's not just daydreaming. It's like, now I'm planning. Now I'm looking

toward that future and taking the steps to get there. At times, it's still really overwhelming, but there's like this sense of self-efficacy that comes a panic, wake up, I mean, heart pounding, sweating. Oh my gosh, I've got to do something. What am I going to do with these opportunities, with this health, with this life? That for a while was so scary and so uncertain, but then you take the first step and you feel a little more sure of yourself. You take the next step, you feel a little more sure of yourself even. So as I'm kind of navigating that, I still don't know necessarily what it looks like to successfully save for retirement, but I'll figure it out. And I know that I'll figure it out. So I'm just kind of learning to trust myself more and more and those things will come. And it's probably not nearly as scary as all of this other stuff that

I've been sitting with and dealing with since I was a kid. I think I can handle it. I think. I have to say, I believe that you can handle it. It sounds like you've taken on bigger challenges than a 401k. So I found myself wondering, and this, it might be so silly, but I found myself wondering if you goof off more now. Like, do you spend more time just like watching a TV show that you don't really like or like scrolling TikTok, even though it's a little boring just because your relationship to kind of time and what feels urgent and not urgent is, you know, it's changing? I think maybe I do, but I think it's for different reasons, actually.

I have become busier. I, you know, before was very busy taking care of CF, doing my treatments, being a mom, raising a young kid, busy in those ways. Now it's very much like I'm in grad school. It's a lot. My mind is really working hard frequently with those things. And so then it's like, I'm going to decompress by TikTok or those things. Those things are kind of like a break from now this world that feels so new and different. And those things are a comfort. As far as just kind of goofing off.

I mean, I think that's been pretty standard for me from the get go, like finding this silliness and joy in a lot of stuff. But yeah, now doing kind of the mindless things are a little bit of a break from kind of the work and the things that I'm doing to advance that future that I'm, that I'm hoping for. Yeah.

You've written a lot to kind of shift gears. You've written a lot about how for many years living with cystic fibrosis made you really focus on maintaining the relationships in your life as something that was really important for you. And your family and your local community are mostly conservative and you were not and they're mostly Mormon and you are not. How do you think living with cystic fibrosis kind of informed the way that you thought about maintaining those relationships across those, you know, kind of cultural and political divides? I think my family has been, you know, such a big support for me and their support has been vital. At times when I was in the hospital and my family was taking care of know. I don't know. When things started to change for me regarding politics or religion, I knew that could be very difficult. I knew that could threaten those relationships, and I didn't want that to happen. And to think of dying young or at any time, really, I wouldn't want to have let

those things destroy or erode the relationships that have always been most important to me. And so, it's been this process of finding ways to nurture those relationships despite those differences. Because there's just not, I'm not ever going to agree with my dad on politics. I am not ever going to embrace the church that I grew up in or that my family still loves so much. Those things are not going to change. But I think we can still have a really beautiful, meaningful relationship. I don't know that I would have felt so strongly about that if not this constant acknowledgement that I'm going to die. know, just that reminder being present has been enough to help me prioritize in my relationships what is maybe most important and what I can let go of or, you know, set some boundaries around. Yeah, something that you wrote about at one point that like really kind of knocked me back and

really made me reflect was talking about kind of having all the difficult conversations and just saying the things that you felt so you didn't feel that things were unsaid. You didn't feel the topics were embroached. And it made me realize how often I avoid those conversations or put it off or don't say how I feel because I have this assumption in the back of my head, well, there'll always be more time. And of course, that's not true. Yeah. And that's not true for anybody. It made me, reading that and thinking about that made me wish that I did not do as much of that.

It made me wish that I was a little more assertive about saying those things, but it's hard. Yeah, it can be so hard. And I am not someone who likes conflict. Yeah, same. But when there's something really important, it's worth it. And I think this life that I have lived has made it easier to have those important conversations. If it's not going to matter in months or years from now, there's a good chance that I'm just going to let it go or shove it down.

But if this is something important to me, I need to say it. We need to have that conversation. And maybe that is also part of what has helped bridge the gap in those relationships. politics or religion but I think they are as invested in the outcome of our relationship as I am yeah it's true and so we talk about those really hard things and it doesn't always go well I've had to call my dad several times to apologize because I've kind of lost it and I've not been very nice you know but but I do I'm not then just going to be like, oh, we'll just forget that happened. I will call and I will apologize. You know, it's not always just easy because it's something that I have really prioritized. It's sometimes really hard. It's worth it. It's a great point about, and this is something I forget all the time or have

trouble remembering is that even if it's a hard conversation where you get mad or you're frustrated with it, that you do both ultimately want that relationship to still work. I guess like absent that kind of the kind of sense of urgency that you have been bringing to it. It's easy for me to forget that. But you're right. Of course, that's true. Has that been getting harder or changed at all since Trek Afta? I don't know that it's really changed. Okay. I guess you've got a pretty good practice at this point.

Yeah. Maybe that became kind of our pattern in those relationships that it's continued. You know, I just, I don't think it's really changed since Trikafta. I haven't really thought of that though. Thank you for... Has anyone in your life seen this, you using this app that sends you this text message and these reminders and thought, I want that too? Or is everyone terrified of it? Both. I have one friend that came to mind right away who immediately was like, I am obsessed with that. What is that app? And she downloaded it right away away a lot of people just think it's really weird yeah like randy and my daughter now they'll just like hear the bing and they'll kind of look at my phone oh you're gonna die mom like it's so normal for them they're so used to kind of that that weirdness um but some people like find it so freaky my sister who has cf shares none of this like we have we don't have any of this in common.

Desire to talk about things like death, desire to look at that. She said kind of what you had said. If she got that text in the middle of the day, she might really spiral. She would have a panic attack. And I just find it oddly very comforting. So yeah, there's been both reactions to that.

What do you think is the difference between you that explains that? Jeez, I don't even know. Like whether nature or nurture, you would think my sister would share some of that, but she doesn't, nor does my family. I don't know what that is, I guess. Yeah. And I think what you're kind of making me realize is that when we think about what we want to accomplish in our relationships, their immediate family or the people around us or what we want to do in our community or who we

want to be, that we're ultimately we're thinking about whether we acknowledge it or not our mortality too. Yeah, absolutely. Yeah. I think it's harder to embrace that idea that that is what we're thinking about. But I think that death, thinking of death, understanding that this life is only for a short time. I mean, even those who are like 80 years old would probably say that it just went past in the blink of an eye. You know, like it's a short time that we have here. That, I think, is a great motivator. I have said, like, death is an incredible motivator. Like, what? There's nothing more pressing than wanting to do the things that you want to do before you go.

Saying the things you want to say before you go. Telling your people that you love them. In case something happens. That is a thought that still is on my mind all the time. What if this is the last time I see them? What if this voicemail from my mom is the last voicemail that I will ever get from her? I think of that all the time still, even though it's much less about my eventual death. That thought has become lighter.

But it's kind of in general, I think that it can be really beautiful to embrace that and let it motivate you. Yeah, to kind of just know and internalize that our time is finite. Yeah. You mentioned that you're getting your master's in social work and that you have been working with a hospice agency to help people through end-of-life care. But you told The Atlantic, and I was kind of surprised by this, that you generally don't share the details of your own life with patients. And I'm wondering why that is, because you're, you know, it's something you think about a lot. It's something you write about. Yeah. The ethical standards of social work really discourage that self-disclosure. Oh, okay. You know, I'm there for these patients, not the other way around. I would not

want to, even by empathizing, by sharing some of that, could kind of pull from the focus of what they're needing to work through or process. And I think all of those things have given me the ability to empathize on a level that others may not. And I don't think that my patients need to understand any of that to feel the way that I'm holding these things with them, the way that I'm kind of helping them navigate their journey. I just can be so present with them without sharing any of that. Do you think you'll continue with hospice work? I would love to, I think. That end-of-life care is something that brought me to this program.

When I was thinking of what I might like to do for a career, working with end-of-life populations just seems like such a good fit. I had looked into, I mean, well before thinking I might actually have a career just for fun was kind of looking into like death doula courses. Social work also has this element of advocacy and policy work that I'm really interested in. And also I can work with end-of-life populations. It just felt like a really good fit. I will be moving on to a new practicum experience. And then after graduation, I may come right back to this agency.

It has been really amazing. I could see myself doing that type of work forever. Oh, that's great. I'm so glad to hear that. Thank you. Well, you mentioned this before, but of course, we just want to reiterate that Trikafta, of course, is not a cure and it's been a miracle for many, many people, but it doesn't work for, I believe it's about 10% of patients. Even when it does work, it can come with many difficult side effects. So I just wanted to ask if you could talk about what you see as the most pressing issues kind of going forward around

cystic fibrosis and what the rest of us can do to help out. Oh, that is a very thoughtful question. Thank you. I love that Sarah kind of covered those other pieces in that article. She talked about those who do not have a genetic mutation that Trikafta will treat. She talked about some people who have stopped it because the side effects were way too overwhelming. There are also accessibility issues. Um, you know, many other countries don't have access to Trikafta at all. There is such a high sticker price and a lot of families struggle to even, even if their insurance does cover Trikafta, the copay can be extraordinary. So there's all of these things that complicate the issue. It would be so lovely if it was even everybody who can take it does super well. It's just not that black and white. Nothing is, right? So I think it's important to,

when having these conversations, to acknowledge that it's not just this happy picture. In the world of CF, it kind of feels like the last four years have been painted as this miracle. And earlier I even said that for many of us, whatever I said, and while that is true in ways, I think could encourage people to not care so much. If you don't understand the urgency of it, or if it's painted as this miracle, happy ending, we can have these happy conversations about it, but people walk away just thinking, oh, that's great. I'm so happy that's the case, without understanding the nuances and complexities of all of these other issues. So I guess that was a very long way of saying, just to maybe acknowledge and talk about the difficult parts of this as well.

Those who feel like they're being left behind, those who feel like they don't have community anymore, those who can't access it, those in other countries who have no hope of accessing this for quite some time. It's just difficult. And so I think there's still advocacy and awareness efforts that are necessary and just like to continue to care. That's what I would say people can do. Yeah. It's a good message to remember that cystic fibrosis is not over. Yeah. Yeah. Jenny, where can people follow you if they want to get more of your writing and your, I would recommend your TikTok page to folks. I think it's fantastic. Jenny.lungsandroses. I probably don't even share much about CF over there. I have some other hobbies and interests that may have become apparent.

Yeah, Terry Styles, mostly. Oh my gosh. Mostly. yeah. They could also find me on Instagram. I think my username is Jenny underscore Lungs and Roses. They can search Jenny Lux and Roses and they will find you on Instagram. Yeah, I used to publicly share a blog and I don't anymore. But I do have, you know, like pieces that I've written for the CF Foundation on their community blog. Just don't expect like much CF over on TikTok. Well, Jenny, I had such a great time chatting with you. Thank you so much for coming on. Thank you so much.

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