August 11, 2016
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One twin decides to plug her internal organs directly into the internet so the other twin can monitor her. Plus, PJ and Alex talk to a listener whose heart was broken by last week's episode.
PJ VOGT: So there’s these two sisters who I know. One lives in Philly, the other lives in St Louis. And they have one of those relationships where, like, one of them is always worrying about the other one. Like, calls all the time, if the calls aren't picked up, she freaks out. And, so one day, they decide that, instead of checking in over the phone, they’re gonna cut out the middle man. The sister in St. Louis, will just plug her cell phone into her internal organs, broadcast her vital signs to the internet, and then the sister who worries--who lives in Philadelphia--she can just check in whenever she wants.
This story seemed crazy, it seems like an episode of Black Mirror or, like, a new Netflix show--it did not seem like a thing two real humans in the world would decide to do. And so, I wanted to know more about it and I wanted to talk to the two women who had decided to do this. Which was easy because one of those women is my mom.
PJ: Um, can you say your name?
NANCY WARREN: Nancy Warren.
PJ: And your job?
PJ: Or, just how you want to be identified.
NANCY: Mom. No, I don't want to be “Mom.” Who am I? Wait.
PJ: (laughing) Don't--get your hand off the microphone.
NANCY: Um ... I don't know, how do I want to be identified?
PJ: I mean, in this ... in this thing that we're talking about, you're kind of a mom and a sister a little bit.
NANCY: A mom, a sister, a caretaker--how's that?
PJ: That's really good.
So, this is my mom. My mom is somebody who worries a lot. Like, If she loves you, she looks at you like everywhere you go, the grim reaper is tip-toeing behind you, swinging his scythe--and you can’t see it, but she can see it--and it’s her job to save you. Like, before I could even talk to her about the experiment she’d decided to do, she steered the conversation to, like, our current disagreement about my health.
NANCY: You know how I feel about your ... gluten stuff.
PJ: Oh boy.
NANCY: Let's not go there.
NANCY: (starts to laugh) Right? I mean, do not--you don't want to go there, right?
PJ: Well, only to say--you believe that I’ve an allergy to gluten. I do not--
NANCY: Believe that you're gluten-intolerant. And that if you would not eat gluten for a week, you would see that you feel better if you don't eat gluten. Which I think is a small price to pay for ... longevity. Not kidding.
PJ: The way that I deal with my mom’s worry is basically by avoiding it. One thing I’ll do is I’ll hide stuff from her--I’ve hidden a motorcycle, I’ve hidden a trip to Cuba, I tried to hide a swine flu diagnosis--and, mostly, that actually works. Which is why I was so shocked to hear that my aunt had decided to go completely in the other direction. To understand how big a deal this is, you need to know just, like, a little bit about the two of them.
First of all, they’re identical twins. And when they were kids, my mom and Aunt Kim were inseparable. They slept in the same bed, they shared everything--they were like one person in two bodies. And then, when they were 10 years old, they went to camp.
[Children singing camp songs]
PJ: It was this summer camp in Wisconsin--it was supposed to be perfect. Giant trees overlooking a lake. There were wood bungalows they’d sleep in at night.
[Children singing camp songs]
PJ: This is actually a record of them singing camp songs there.
But when they got there, what actually happened is that Kim started to get mysteriously ill at night. I’ll them both tell the story, it’s OK if you can’t tell their voices apart. Here’s my aunt Kim.
KIM SCHARFF: In the middle of the night, I would go walk across the campus and get in her bed and I would cry.
NANCY: Because her stomach hurt. I mean, she really felt bad. And, I'll say, she was eating ... like six huge meals a day. She was eating more than we ever eat and she was getting really skinny.
KIM: And she wrote Mom and Dad a letter and said, "Kim's not OK. Kim's not OK, there's something wrong, there's something wrong."
NANCY: And the camp director called me in and said, "What's this about?" And she would not send that postcard and she would not let me call my parents.
PJ: When their parents finally picked them up from camp, they took Kim to the hospital where the doctors diagnosed her--Type I diabetes.
They kept her there for two weeks. It was the first time that my Mom and Kim had really been apart. Kim says she remembers the day that my Mom was finally allowed to visit.
KIM: Nancy came to the hospital with a mouse in her pocket. Our mouse (laughs).
PJ: You guys had a mouse?
KIM: A gerbil. I just remember that I wasn't supposed to go beyond these doors ... and whoever Nancy was with took my hand and led me out those doors. And then, Nancy got in my clothes so that she could go see what my room looked like.
KIM AND PJ: (laugh)
KIM: I can't remember whether we kept the gerbil in her pocket when she went in there.
PJ: Kim came home from the hospital, but things at home weren’t great.
NANCY: My mother, like, never learned how to ... give her a shot, never learned how to take care of her diabetes.
KIM: Dad used to say, "Kim, eat that cake. Live a little." You know--and he didn’t mean it in a bad way--he loved me. But he hated it. That I couldn't do what everybody else did.
PJ: So at 10 years old, my mom made this decision--if the adults in their lives weren’t afraid enough for Kim, she would just have to be the one to pick up that slack. All of it. And that’s what she’s done for the last five decades. Even though my mom and Kim live almost 1,000 miles apart, whenever something goes wrong with Kim’s health--like if she’s hospitalized or if she discovers a new complication--my mom immediately gets on the phone with a million questions.
“What happened? What did you eat and when? Why do you think this happened this time?” Which makes Kim feel incredibly guilty, like, any pain she feels--not only is it her fault, but--that pain will hurt someone else even more than it hurts her.
KIM: It’s hard to watch Nancy have to watch this. And I have major guilt about--and I’ve talked to Nancy about this a lot is ... want to confide in her because I’m hurting, but when I confide in her it hurts her. And … she always says, “Well Kim, what’s our relationship if you--if you can’t confide in me?” And of course she’s right. But it’s just so hard on her.
PJ: For as long as I’ve been alive, it’s felt like this. Like they’re just stuck in a very painful hall of mirrors. And then, about a year ago, Kim got this piece of technology.
PJ: What do you see when ... what’s the icon look like?
KIM: There’s a little needle that goes into my body.
PJ: The needle goes into her stomach and it sends a number to her phone--her glucose number. If the glucose number is too low, it means she’s in danger of passing out; if it’s too high, it means she’s in danger of going into a manic state. It’s like she now has an odometer. But there’s this other feature.
KIM: I think it “blue tubes?” With the--
KIM: With the--with receiver.
PJ: This is like the world that I understand and the world you understand suddenly overlapping.
PJ: Kim’s phone can broadcast her glucose number to anybody in the world--her husband, her doctor, anybody she wants. And as soon as she got this thing, she knew that one person would want access more than anybody else.
KIM: When I first got this, PJ, for the first year I had it, I didn’t … I didn’t say ANYTHING to Nancy.
KIM: That sh- we could share. You know? That I could share this information. I did not want to be monitored. I didn’t want my life to be monitored. It was like, “Holy shit--no!”
PJ: But she made a mistake. She was visiting my mom and she happened to check the app in front of her.
KIM: She said, “I want to do that!” (laughs) I said, “No.”
KIM AND PJ: (laugh)
KIM: And she said, “Kim. I’m gonna be a lot less anxious with that thing on my phone than I am with that thing off my phone.” “OK. We’ll try it.”
PJ: So, my Mom--who in the past, like, could only worry about her sister some of the time--it’s like now she’s at an all-you-can-eat worrying buffet.
KIM: She’ll wake up in the middle of the night and look at the CGM. She’ll look at my numbers on her cellphone and … a couple of times she called when my sugar was high in the night.
PJ: Here’s my mom.
NANCY: We went through a period that ... the beeper on her ... thing, machine-thing, was off. So when her blood sugar was high or low all night, she wasn't hearing it. Her thing was going, "Beep-beep!"
PJ (laughs) So there's like a smoke alarm, but it's going off in a house in Pennsylvania, not in the house in--
NANCY: Exactly. We weren't getting any sleep and Kim and Dick were sleeping perfectly well. (laughs) It's like, "Oh my god!"
PJ: This is my personal idea of hell. My mom just watching a graph of my minute-to-minute health, like a Wall Street guy who has bet his last dollar on my breathing and is losing his mind every time the graph dips. They started doing their experiment in December. I first started talking to them about it in March. And in June, my mom was visiting me and I asked her to just, like, check her phone, to show me Kim’s day from her perspective.
PJ: So what does--what does her day look like today? Like, we’re looking at just her day, right?
NANCY: Yeah. In the past, say, three hours, she's ... gone from ... 80 down to 50, up to 225.
PJ: How do you feel looking at that?
NANCY: Like she’s had a hard day. Like that would be tiring for her to … go up and down.
PJ: And how about for you?
NANCY: Um ... I don’t know. I don’t want to say, because I don’t want to … umm … it just, you know, it makes me realize that she’s had a hard day. Makes me a little bit sad.
PJ: It feels like you don’t want to say ... that her having a low day makes you feel sad. But it makes sense to--how come you wouldn’t want to say some--
NANCY: ‘Cause I don’t want her to be--to feel self-conscious of ... me seeing her--I don’t want her to make … I don’t want to make her feel like she makes me sad. But ... it’s OK.
PJ: My mom checks this app and has these feelings eight to fifteen times a day. She’s getting what she said she wanted, she’s getting a clear picture of Kim’s health. But she’s getting it at a moment when Kim’s health is worse than it’s ever been in the past. That’s how diabetes works. Kim gets these complications. Like, she’s had a double mastectomy, her eyes have gotten really bad. And she learns to live with her complications, but then something else always breaks. It's a depressing cycle that Kim has been fighting for 50 years. But … she says that now that my mom is there staring at the cycle every day, things have started to feel different.
KIM: Um, it started out that she was REALLY involved. Like, you know, I don’t think she ever really took her eyes off of it.
PJ: So what did that look like? How did you know?
KIM: Calling a lot and questions a lot and … um … it was gleefully fun for me. It's the first time I've ever shared ... personally with diabetes with anybody.
PJ: Wait, why was it fun?
KIM: Ah, I had a friend in the sandbox.
PJ: What do you mean?
KIM: (With me.) Like, we could play "diabetes" together (laughs). Dr. Kim and Nancy. “How do
we want to fix this?” Um--
PJ: Versus what did it feel like before?
KIM: Me alone. Me, Dr. Scharff.
PJ: And people only see when things go bad or whatever.
KIM: That's right.
PJ: In the past, Kim showed up on my mom’s radar at her worst moments, like after something truly scary had just happened. But now that she’s pinned on my Mom’s radar 24/7, they’re both noticing things they’d never really seen before.
Kim: Nancy will say, “Kim, you had a good day today! Objectively, look at it … stop scrutinizing it. You’re doing well.”
PJ: These good days were always there. Like, there were actually probably even more of ‘em in the past. But they didn’t get to celebrate ‘em. The good days got lost--they got lost in Kim’s guilt, they got lost in my mom’s fear.
My whole life, every memory I have of my mom being truly happy and relaxed came during the rare holidays where she could get the whole family to our house. She could know that everybody was safe. Right there, in front of her. Her imagination can’t run wild when she has so much data.
Which also means she and Kim get to spend more time talking about stuff that just isn’t about diabetes. The other week, my sister was visiting home, and I asked her to record the conversation when Kim called my mom.
KIM [speakerphone]: It is really--is the humidity just horrible?
NANCY: No, right now it’s really nice. I rode--
KIM [speakerphone]: [indistinct sound]
NANCY: --this morning.
KIM [speakerphone]: Wow, Nanny!
PJ: They talked about the stuff any two sisters would talk about.
NANCY: Except there’s a ton of algae and seaweed and stuff in the water, so it’s really … because the--it’s been so hot, we d- haven’t had a lot of rain. So makes it hard. To row. ‘Cause you have to try and stay out the seaweed.
KIM [speakerphone]: Cause it gets tangled in the row… in the oar?
NANCY: It gets tangled in the oar and pulls you over, right?
KIM [speakerphone]: Wow.
NANCY: Mmhm. [fading] Kim they opened a coffee shop you would love for next time you visit.
PJ: Do you read the listener email?
ALEX GOLDMAN: No, I generally don’t.
PJ: I accidentally set it so every single one comes to my phone and I have not had the wherewithal to turn it off.
PJ: Yes. You missed an email this week. Um ...
ALEX: (groans) and so now you’re just gonna read them to me? (laughs)
PJ: It’s not a hurtful one--the subject line was just, “You broke my heart.”
ALEX: Yeah, th- this is already setting me up. Like, I’m already f- do you know when you--
PJ: Would it--
ALEX: --have you ever had an anxiety attack?
ALEX: You know that out-of-control feeling, that, like, tightness in your chest--
ALEX: --that makes it feel like you can’t breathe?
ALEX: It’s starting.
PJ: Would it calm you down if I told you that this isn’t about you?
ALEX: (deep breath) Um.
PJ: Can you believe about (laughing) anything in the world?
ALEX: Yeah, I don’t really believe that--that it’s about--not about me
PJ: OK, well so--th- this was the episode about Marina Joyce, the YouTuber. And we got this one email with the subject line, “You broke my heart.” It was somebody who had really complicated feelings about a moment in the episode that, like, it never would have occurred to me that somebody would have any feelings about.
PJ: Which is why it was interesting. So do you remember when we talked to the writers from MTV and there was this brief moment where they were talking about the amount of YouTube subscribers Marina Joyce had and they were like, “Oh, she has, like, 600 thousand”?
MAEVE: 600 thousand subscribers, which is more than I have but … I’ve heard isn’t like that impressive.
PJ: What’s impressive in YouTube world?
ERIKA: Like 2 million …
MAEVE: Is, like, “Sure. You did a good job.”
ERIKA: “We’ll pay attention.”
PJ: That moment.
ALEX: That moment is the moment that broke her heart?
PJ: Yes. So the person who wrote the letter--her name’s is Krista.
[under narration--Skype ringing]
PJ: She lives in Virgina Beach.
KRISTA: Hi, PJ.
PJ: How’s it going?
PJ: I called her on Skype.
PJ Um, if you’re, like, at a party and someone asks you about your Youtube channel, how you describe it?
KRISTA: I tell them it's a food and drink review channel that I do with, um, myself and three other friends. And the guys try anything and everything they aim for the newest stuff and the weirdest stuff.
[Audio from Tylons! Youtube video]
STEVE: Welcome to Trylons! Today, we are trying the Mac--what is it called?-- the Mac and--
CODY: Mac and Cheetos.
STEVE: Mac and Cheetos, which sounds awesome.
CODY: Kudos to your marketing team, Burger King. It's much better than that vaguely-racist jalapeno chicken fries.
STEVE AND CODY: (laugh)
[end Youtube clip]
PJ: So Krista started with the Trylons! in 2015. Um, she says they put out two videos every week. And these videos take forever to make.
KRISTA: There is so much that goes into producing something. They only end up being, like, 4 to 5 minutes long, but even that, breaking it down, I mean, they take hours. And then, my lunches are just, pretty much, spent editing.
PJ: You mean your lunches at work?
KRISTA: Yeah, I have a 9 to 5 office job and (laughs) I take my hour lunch and I stay at my seat and I just scooch my work computer back, bring up my laptop, and just edit.
PJ AND KRISTA: (laugh)
KRISTA: I know people look at me funny. It - it's--it's goofy, but ... it’s - it's what I have to do.
PJ: But the problem is, like, it’s not just her 9 to 5. Like, she also has a part time job, she’s also in the Army Reserves, which takes a weekend out of every month, she also, like, has a husband who would like to see her sometimes. And so, she just, like, she just wishes she had more time.
KRISTA: The dream would be that we could ... not make millions of dollars, not get to a point where everybody knows our name or anything like that, would just be to get to a point where my ... way of life could be making these videos that I love to make and being able to put them out for - there for people to ... enjoy.
PJ: Like, what you're saying, it's like ... you want to quit your day job.
KRISTA: (laughs) Yeah! Yeah--
KRISTA: --(laughing) I guess that’s what I’m saying! (laughs) And - and--and don’t get me wrong, um, I’ve been very, very blessed. Very, very lucky. Um, up until … this last year, I was actually working four part-time jobs to make ends meet.
PJ: So she’s breaking her back doing this work for a year … and then, she listens to this podcast and they say that, if she were ever to reach 600 thousand subscribers--that wouldn't even be impressive. Which particularly hurt because Krista's channel has 600 subscribers.
KRISTA: Just--yeah, 600. 6-0-0. (laughs) So needless to say, that was a bit of a … “Ohh.” Like … compared to, you know, moderately successful people on YouTube, we’re nowhere close.
PJ: And up until that moment, like they’d felt really good about 600. Like, they did a celebration video when they hit 500.
[Audio from Trylons! YouTube video]
STEVE: First, I want to thank mac and cheetos for A) being awesome, go check out--
CODY: Also being a nightmare food. But, thank you--
STEVE: Yes. Also, Delish for ... uh--
CODY: Embedding our video!
STEVE: Yeah, embedding our video on your article.
[end of YouTube audio]
KRISTA: The hardest thing has been ... the internet--YouTube, Google--all the things that make it up, they are all formulas.
PJ: What do you mean?
KRISTA: Well, there are people who make a living on the internet and they just know there are certain search terms that are gonna bring up more things, there are certain things you can--you can do in order to make yourself more prevalent.
PJ: I mean, it sounds like what you’re saying is, like, you feel like you’re you’re trying to, like, crack the code. And there’s, like, people who have cracked it and they’re doing … whether it’s, like, knowing the right people or using the right keywords or whatever--
KRISTA: Yes, yes exactly. I mean, that - that’s what my friends and I throw around all the time, it’s like, the algorithm. ‘Cause we’ve spent the time. We’ve - we’ve--we’ve studied. I mean, we sat down, we watched, um, YouTube did a series for a while called the Youtube Creator series and tried everything they've suggested with their thumbnails, where we’re trying to … eat and drink foods that are relevant and that type of thing. We’re trying to network. But, at the end of the day, it just still feels like we’re at the mercy of this algorithm that we can not crack.
PJ: I honestly felt like I didn’t know what to say to her ... in a lot of ways. Like I didn’t know ... I just didn’t know what to say.
ALEX: What can you possibly say in that circumstance? Like, uh, I mean, is she asking you for the--
ALEX: --computation for internet success?
PJ: She’s saying, “This sucks and here’s what it looks like from where I sit.” And, like, in theory, we spend a lot of time thinking about the internet. And, like, whatever--I felt like I should have something smart to say and I didn’t have anything to say really.
And, like, it kicked it around in my head for a couple days after we talked and--finally--it made me think of, like … it actually made me think of a talk that I saw in 2014.
PJ: Uh, you remember when I went to XOXO?
PJ: So--for people who don’t know XOXO--it’s a festival where … it’s, basically, a festival where people who make on stuff on the internet--like, many of them who make stuff that gets a lot of attention on the internet--they go to XOXO and they, like, give talks.
And the specific talk that it made me think of was a talk by this guy Darius Kazemi. Like, he’s made a bunch of really popular bots. Uh, like, you’ve seen some of these bots. Like, they get--he comes up with a weird internet stunt and people pay attention to it in exactly the way Krista wants people to pay attention to her stuff.
PJ: So, I was sitting in the crowd, he came out and he gave this talk which I will never forget. Like, he comes out and he’s like, "Hey. Today, I want to talk to you about how I just won the lottery. Like the actual lottery."
DARIUS KAZEMI: So here we go. These are my numbers. Uh, and as you can see, uh, there are an awful lot of nines.
DARIUS: Uh ... and a surprising number of threes. Now, you might not notice this at first, but nine is three times three.
PJ: And the point that he's making--which, like, the room sort of uncomfortably begins to realize--is that all these people who have walked on to stages like this one and said, like, "I became famous on the internet because I'm smart and I had a strategy," those people are just as dumb as a lottery winner who comes and tells you that he's anything but lucky.
ALEX: That’s pretty good.
PJ: It was--
ALEX: I’m into it.
PJ: It was really good. And then, he was like, “That was my satire but, like, here’s my actual theory of internet success.” And he brought up a list of 112 weird internet projects that he’d done in the last two years. And only nine of them--nine of them--had been hits.
DARIUS: Uh, and what I've learned is that--beyond a certain level of effort--uh, there's basically no correlation between the amount of work you put into something and how successful it is. At least for me.
There's not much that you can control about your creative success once you've actually made the thing. Uh, and, in a sense, there're--there are two kinds of creative advice that I think you can get from creative people. Um, the first is how to buy more lottery tickets. And the second is how to win the lottery. Uh, and I think the former can be extremely useful, uh, and I think the latter is nonsense.
[end of video]
PJ: OK. So, to bring it back to this whole question of, like, whether there's an algorithm, whether, like, there're people who have figured this thing out. Like, the good news or the bad news or whatever is, like--no. Nobody's figured it out. Like, people are running around outside holding, like, giant metal poles, hoping to get struck by lightning. And, sometimes, some of them do. And, like, the smart ones realize that ... it wasn't because they were, like, doing a better job holding their pole.
PJ: But the good news is, like, the part that is within her control. The things that she can do right, she's pretty much doing. Like, Darius would probably say, "Do more projects, like me. So you have, like, more chances for things to hit." So if she ever finds another web series that also exciting--and she wants to--she could do it.
But, like, mainly, it's like, "Work hard, show up, know that … you are buying a lottery ticket."
ALEX: I don’t know how to feel about that. Because on one hand, the playing field is level, but on the other hand, it just feels kind of hopeless.
PJ: But the thing is, like, Krista has said from the beginning, like, she knows that it’s long odds. She’s, like, made peace with the fact that it’s long odds. What hurt her--she said to me--was, like, feeling like--what she heard in that, like, two seconds of podcast--was that if she wasn’t winning the lottery, then she wasn’t valuable. And what Darius is saying is, like, valuable things don’t win the lottery or, like, they do, but they don’t because they’re valuable. Like, as long as you know it’s a lottery and as long as you don’t feel bad for not winning it, then it’s fine.
ALEX: Yeah, I guess. I just hate gambling.
PJ: OK, so here’s what I think we can say--keep sending us emails.
ALEX: Yes, keep telling us all the ways that we've broken your heart.
PJ: Little ways and big ways.
ALEX: Uh, our email address is email@example.com.
PJ: That email address sounds fake, but it's not fake. It goes ... I think it's still going to my phone. 'Cause I don't know how to turn it off.
If you want to find Krista's videos, just go on Youtube and search “trylons.” It's T-R-Y-L-O-N-S
PJ: Reply All is hosted by me, PJ Vogt, and Alex Goldman. We were produced this week by Sruthi Pinnamaneni, Phia Bennin, Chloe Prasinos, and Damiano Marchetti. Our executive producer is Tim Howard and we had a lot of help this week from the Invisibilia gang, particularly Alix Spiegel and Abby Wendle.
Actually, that opening story you heard, a version of it originally appeared on NPR’s Invisibilia, which, if you are not listening to it--why are you not listening to it?--go check it out.
Heroic production assistance from Thom Cote. We were edited by Peter Clowney and mixed by David Herman.
Special thanks to Annette Sanburn and Andy Baio.
Matt Lieber is a long lunch.
Our theme music is by the mysterious Breakmaster Cylinder. Our ad music is by Build Buildings.
You can find more episodes of the show at our website, replyall.limo, or on iTunes or Google Music or wherever you--you, personally--decide to get podcasts.
We are working on stories next week, we won’t have a new episode, but we will see you in two Wednesdays. Thanks for listening.