Transcript

840: How Are You Not Seeing This?

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Prologue: Prologue

Tobin Low

From WBEZ Chicago, it's This American Life. I'm Tobin Low, in for Ira Glass. You may have heard of comedian Tig Notaro, but if you're a gay person like me, you have really heard of Tig Notaro. She is what I would call gay famous, which makes the story of what happened to her so surprising. She and her wife, Stephanie, have two kids, twin boys.

And after seven years of living in the same house with Stephanie and Tig, having their two moms tend to every meal and butt wipe, seven years of the boys telling their teachers and random whoevers that they have two moms, they're all in the car on the way to first grade one morning.

Tig Notaro

Stephanie and I were just in the front seat talking, and they were in the back seat talking, like we always do. And then Stephanie said something about us being gay. And our son, Finn, leans forward and pokes his head between us, and he says, you're gay?

Tobin Low

[LAUGHS]

Tig Notaro

We were obviously just as shocked as he was. We were like, uh, yeah. And he said, what's "gay"? And that was a whole other level of stunned. Oh, my gosh. How is this information only just now coming out?

Tobin Low

Tig's been with her wife for over a decade. And as far as they knew, they've been gay for the entirety of their children's lives. But apparently, it was news to Max and Finn.

Tig Notaro

Then I started to feel insecure, thinking, oh, my gosh, here he's lived over seven years not knowing he had gay parents. What if he's upset now? What if he doesn't like his life or his family, or he's disappointed in some way, or--

Tobin Low

What's the first thing you say back to him when he asked that question?

Tig Notaro

I was saying, OK, so gay is when a boy likes a boy, or a girl likes a girl. And that would be specific to being gay.

Tobin Low

Mm-hmm, mm-hmm.

Tig Notaro

And they were just like, oh, OK.

Tobin Low

Before Tig can say more, they're pulling up in front of the school. The car ride is only a couple minutes long. And then the kids are running out of the car, and Tig and her wife are left to wonder how their sons had possibly not seen something right in front of their faces.

Tig Notaro

And we drove away, maybe going half a mile an hour. We were so stunned. Stephanie and I glanced at each other like, what in the hell just happened?

Tobin Low

Do you have a moment after this comes out where you're like, oh, no, what kind of parent am I that this hasn't been discussed? Is there a part of your brain doing that?

Tig Notaro

Oh, a million percent. I mean, [LAUGHS] when there's any sort of moment-- I was going to say "moment like this," but I don't know how many moments like this I've had. I mean, I did have a similar one when they were five and I was reading them a story before bed. And Finn interrupted me and said-- they call me Mare, which is for "mother," French.

And Finn said, Mare, are you a boy or a girl? And that was when he was five. And I just stopped, and I laughed. And I said, well, what do you think I am? And he said, I think you're a boy. And I said, OK. I said, well, I am a girl. And he said, huh, OK. But you look like a boy, right? And I said, yeah, yeah. And then we just kept reading the book. And I was just laughing to myself like, oh, my gosh, my son didn't know I was a girl.

Tobin Low

One reason all of this was especially mystifying was that the boys, like I said, definitely knew they had two moms, were kind of proud of it.

Tig Notaro

Not like in a, "Oh, yeah, we have two moms." They're just like, "We have two moms. We have two." Also, the school they go to is very progressive and celebrates pride every year. And everyone drops their kids off in rainbows. And--

Tobin Low

[LAUGHS]

Tig Notaro

And it's like, I guess they didn't know what the pride was. They're just running around with rainbows on them. They're like, sure, Happy Pride.

Tobin Low

Tig and Stephanie eventually figured out what happened. Sure, Max and Finn knew they had two moms. But Tig and Stephanie had never sat down with them to say, two moms who are married, that's what gay is. And more importantly, they never said the words, "We're gay."

Tig Notaro

It took a while for me to sort that out and understand that a wedding picture and two moms doesn't equal gay.

Tobin Low

Right, right. And I was thinking about how when you first come out, there's a moment where you have to do this spiel a bunch to people. And then it sort of tapers off, and you just start living your life. Like, I can't remember the last time I had to sit down and have a coming out conversation with somebody.

Tig Notaro

Exactly. It has been so long since I had to come out to anybody. Anybody.

Tobin Low

Right.

Tig Notaro

And I would never have guessed in my own house, there were two people--

Tobin Low

Right. [LAUGHS]

Tig Notaro

--that didn't-- we have three cats. I feel like they probably know we're gay.

Tobin Low

[LAUGHS]

This stuff happens all the time. The people close to you miss something about you that seems so obvious. The truth is right in front of their face, and they don't see it.

Today on the show, we have stories of people trying to end this misunderstanding once and for all. In one, they build an actual machine to try to convince the other person. In another, they call a scientist for help. One person even tries reaching out to the federal government, which kind of works. Actually, in every case, they get a certain kind of satisfaction. Stay with us.

Act One: There Will Be Blood

Tobin Low

It's This American Life. Act One, "There Will Be Blood." OK, so in this first story, a person gets so fed up with other people dismissing a thing that was happening to them that they devise a way for the other person to actually experience it firsthand. They build a machine that simulates period pain.

Maybe you've seen these videos on TikTok of people, mostly men, getting hooked up to one of these things, getting to feel for the first time what a person with a uterus goes through regularly. Aviva DeKornfeld, one of the producers on our show, got curious if this social experiment really changes anything, if men who didn't really believe their partners about what happened during their periods would be convinced by this experience.

So she went to see it in the wild at a rodeo in Calgary known as The Stampede, where the machine was set up for anyone who might be a doubter. Here's Aviva.

Aviva DeKornfeld

I'll admit, I came into this pretty skeptical. The idea that five minutes of manufactured cramping could somehow make men understand women better, it seemed optimistic, especially when their starting point seemed to be so basic. I asked men standing in line for the machine the question, what does a period cramp feel like? Their guesses included food poisoning, bone pain, getting kicked in the balls, a pinch, and being really full.

More often than not, they made these guesses while standing next to their partner, who was off mic, silently shaking her head no. Either more women than I thought avoid talking about their periods with their partners, or most of these boyfriends have extremely selective hearing.

Aviva DeKornfeld

How is your period pain?

Girlfriend

Really bad.

Aviva DeKornfeld

Really?

Girlfriend

Yeah.

Boyfriend

I didn't know they hurt. What? [LAUGHS]

Aviva DeKornfeld

You didn't know?

Boyfriend

No.

Aviva DeKornfeld

You're learning right now that your girlfriend has terrible period pain?

Boyfriend

Yeah.

Aviva DeKornfeld

How long have you been together?

Boyfriend

Five years.

Aviva DeKornfeld

His girlfriend asks, what did you think was going on when I was in bed?

Boyfriend

I don't know. I thought you just wanted to sleep.

Girlfriend

Once a month?

Boyfriend

Yeah. I knew it happened. I never really asked much about it.

Aviva DeKornfeld

This kind of ignorance is the exact motivation for Lux Perry, the person running the simulator. Lux is 31. They're sharp and funny. They first started running the simulator a couple of years ago and have since taken it all over the world.

Lux is doing all of this because period pain has been the defining factor of their life. They have severe endometriosis, which is a chronic disease where tissue that's supposed to grow inside the uterus grows outside of it, which causes all sorts of problems, including extreme pain. Lux has been to the hospital with complications over 75 times, and it took over 20 years for them to even get a diagnosis.

Lux Perry

And when, A, everyone around you is telling you that the pain that you experience is completely not real, and it's ruined your entire life, it's kind of how you end up building a simulator. [LAUGHS]

Aviva DeKornfeld

Lux isn't the only one who's done this. There are lots of period simulator videos online. But the machine people are using in those other videos only triggers a very superficial cramp, nothing like a real period. Whereas Lux had their machine modified to make the cramps more intense, with the goal of getting people to understand what period pain actually feels like.

Lux Perry

So you're going to peel them off this plastic thing. And you're going to apply them directly to your skin where your ovaries would be. So--

Aviva DeKornfeld

The way Lux's machine works, you place two sticky pads where your ovaries are or would be, which is lower than you think.

Lux Perry

So you want to put them as close together as possible.

Aviva DeKornfeld

Those pads are connected by wires to a handheld machine, which then triggers a cramp. The machine goes from 1 to 10. Lux says most women who have tried the machine say their normal period pain is around level 7, some a little lower, some much, much higher.

I watched 100 people get hooked up to the machine over the course of two days. When Lux cranks the simulator up, women tend to be stoic. They calmly describe the pain they're feeling. I watched one woman on a level 10 say thoughtfully, huh, this is what it felt like when my cyst ruptured. Whereas men tend to sound more like this--

Man

Oh, my god. Jesus Christ. OK, enough. Enough. Fuck me. Oh, my god. Fuck. Sorry. I'm sorry that happens to you.

Aviva DeKornfeld

Whenever a guy was hooked up to the machine, women would crowd around the booth to watch. They would shout questions at the man. Would you still be able to go to work? Go out with friends?

Woman 1

Having that pain, would you go to the gym?

Man

Oh, no, no. I wouldn't want to. I mean, I probably could, but it wouldn't be a good day.

Aviva DeKornfeld

Another woman jumps in.

Woman 2

I have to pick up kids all day. Would you think you could do that?

Man

Probably not. I don't know. It wouldn't be fun for sure. I'd probably just want to sit, watch TV, and not really do much.

Aviva DeKornfeld

The women badgered and heckled from the sidelines, good-naturedly, but still, oftentimes, they would lament to one another that the simulator could only simulate cramps, wishing it could somehow also trigger the headaches, back pain, hormones, acne, nausea, depression, and everything else that comes with menstruation. There seemed to be a real pleasure in watching the men writhe. A tiny bit of justice, if only for a minute.

Let me just say, I know how all this sounds so binary. I don't mean to drag us back to a time when we thought of men and women as two totally different species. And I'm not saying all men acted this way, and all women acted this other way. There are obviously exceptions, though, honestly, as far as I saw, not many.

To be clear, most of the men I met were nice, empathetic. They clearly knew what they were supposed to say. Of course, they believe women, even if other feelings slip out sometimes.

Aviva DeKornfeld

Why do you think your girlfriend wants you to do this?

Boyfriend

I don't know how it feels. So she always whines about it. So I got to test it out and see what she's whining about. [LAUGHS]

Aviva DeKornfeld

Does "whine" feel like the right verb to you?

Girlfriend

No. No. They actually hurt. Just wait. Wait till you see--

Aviva DeKornfeld

At least half the men who tried the simulator did so because their girlfriend or wife was dragging them, sometimes literally, over to the booth and forcing them to try it. And Lux would have a number of couples storm off afterwards. They like to guess which couples are going to break up.

Lux Perry

Yeah, we had this couple last year. They were young-ish, maybe in their mid 20s. And she really wanted him to experience it because she had endo.

Aviva DeKornfeld

Endo, short for endometriosis.

Lux Perry

He was completely dismissive leading up to. And then when he was on the simulator, he, like, pushed through it. You can see when people are really trying to suppress the experience. And so he was really like, wouldn't say that he was in pain, and they stormed off completely pissed at each other. She was like, why would you-- why do you have to say all those things in front of people? We could hear her.

Aviva DeKornfeld

What was he saying?

Lux Perry

Well, he was saying that she exaggerates, that it's not that bad, like that if this is what you're going through, there's no reason that you can't do the dishes, or it was, like, really offensive stuff. And it's just, sometimes, you want to say something to the girl. You're like, this guy is such an ass.

Aviva DeKornfeld

So can this humble machine change a man's mind? Eughan and Kasia are a great test case for this question because they do not see eye to eye about her periods at all. Eughan's from South Africa. Kasia is from Poland. They're both in their early 40s, and they're the kind of couple that is always talking past one another, constantly disagreeing.

Eughan

We've been married for 14 years. We have two big kids.

Kasia

Well, not big. They're 10 and 7, but yes.

Aviva DeKornfeld

Even so, there was a real affection between them in a sort of old timey, the old ball and chain, is my spouse a real pain in the ass, kind of way.

Eughan

She wants me to stop complaining.

Kasia

Yeah, I think he thinks it's a choice we have as women when we get really cranky, and I'm like, it ain't a choice. It's what it is, and that's what it feels like.

Eughan

As long as it's the real feeling.

Kasia

But I had a history of very, very difficult cramps. He thinks I'm difficult when I'm on my period. And I'm like, come on. I mean, I've got to be, right?

Eughan

Let's see.

Aviva DeKornfeld

Eughan was actually the one who spotted the booth first and suggested they try it, which surprised Kasia. She said he's never displayed an interest in her period pain, though secretly, she wondered if he was doing it to see if she was exaggerating or at least prove his own toughness.

Eughan and Kasia get hooked up to the simulator together so they'll feel the exact same thing at the exact same time. This way, Kasia can say to Eughan, this right here, this is what my cramps feel like. While they're hooking themselves up, Eughan repeatedly tells Kasia, don't cheat. And he looks over at her to make sure she's putting the pads on in the right place.

Eughan

Where's yours?

Aviva DeKornfeld

You're so skeptical of her.

Eughan

She'll cheat.

Kasia

He thinks I'll cheat. Do you see what I'm dealing with?

Lux Perry

So there are 10 levels. The first four levels are just kind of like a tingling sensation. 5 is when it drops to a lower frequency and should feel more like a cramp. 7 is what most people experience. And anything over 7 would be considered painful.

Eughan

You're doing it evenly.

Lux Perry

I am. You really are skeptical.

Kasia

Right? This is all about competition.

Aviva DeKornfeld

Eughan, for some reason, seems convinced that Lux might secretly crank his machine up while leaving Kasia on a lower level. Lux walks them through the levels. They get up to a level 6.

Eughan

That can't be how it feels.

Kasia

It feels really tight.

Aviva DeKornfeld

Wait, you said it can't be how it feels?

Eughan

Never. The whole time?

Kasia

Yeah.

Lux Perry

Up to seven days.

Eughan

Really?

Kasia

Yeah.

Aviva DeKornfeld

The next cramp comes.

Eughan

[SCREAMS] [LAUGHS] Done. Stop.

Kasia

No, we're going to 10.

Lux Perry

You're going to stop? OK, it's off.

Aviva DeKornfeld

Lux stops Eughan's machine, but keeps Kasia's on, who's now up to a level 9. Eughan does not want to join her.

Eughan

Never do a 9. What was that? 8?

Kasia

No, you got to do 9, Eughan. Come on.

Eughan

No, no. No 9. Listen, I think this one's too high. It's like going through my stomach. I don't think that's how it can feel. Is that really how it feels? Is that how it feels, though?

Kasia

This is period pain right now. I'm feeling it really cranking up.

Eughan

Don't do mine.

Kasia

Yeah. Oh, yeah, this is a period pain. Like, it's really deep into you. That's it.

Aviva DeKornfeld

Kasia eventually convinces Eughan to get back on the machine.

Kasia

Number 9. You got to do 9.

Eughan

But quick, if I say off, you off it, huh?

Kasia

No. [LAUGHS]

Eughan

[SCREAMS]

Kasia

Yes.

Eughan

[PANTS] It's like giving birth.

Aviva DeKornfeld

Is this like giving birth?

Kasia

No.

Eughan

You're doing 10 now? [SCREAMS] Is that 10? Is that 10? Is that 10? Is that on 10 now?

Lux Perry

Yes.

Kasia

Yes. That's a deep pain. Hold on. One more, and then we're done.

Aviva DeKornfeld

You're squeezing her arm off.

Kasia

Yeah, no, he's hurting me. Yes. You know when the pain goes all the way to your back? That deep muscle pain that goes into your back? That's the period pain.

Eughan

The whole time?

Kasia

The whole time continuously, yeah.

Eughan

That's not nice, though.

Kasia

It comes in waves.

Eughan

But is that how it feels the whole time?

Kasia

That really deep pain. And it literally feels like--

Eughan

Why don't you make a scene about that?

Aviva DeKornfeld

Do you think this will change the way that you interact with your partner?

Eughan

Definitely.

Aviva DeKornfeld

Really? In what way?

Eughan

Well, now I will ask her are you having the same vibrations as you were? It's so tough.

Aviva DeKornfeld

So do you feel like you believe her more now?

Eughan

Definitely.

Aviva DeKornfeld

How come you think that you had to experience the pain yourself to believe her?

Eughan

To be honest, I just thought it's like mood changes.

Aviva DeKornfeld

You thought she was just being whiny?

Eughan

Whiny.

Aviva DeKornfeld

Eughan went from, "My wife complains too much about period pain," to asking why she didn't make more of a scene during her period over the course of five minutes. So, theoretically, mission success.

A few days later, the longevity of Eughan's transformation was tested. He and Kasia were back at home in England, and Kasia had her period. She was sitting on the couch and told Eughan, I'm at a level 8 right now. He said, OK. He understood. Kasia told me, if you think he then got me a glass of water or a pillow or took care of me in some way, that's not the husband I have. But he acknowledged my pain, and that was new. And I appreciated it.

I'd flown to Calgary to watch men get hooked up to the simulator to see what they'd learn about period pain. I hadn't planned on learning anything about periods myself. I already have one. I figure, I know about them. But I was shocked by how many women offhandedly mentioned going to the hospital for their period pain. At first, I wasn't sure if I was just way more ignorant about period pain than I'd realized, or if I was just in Canada, where regular people can actually afford to go to the hospital with some regularity. It was probably both.

But there were just so many women in so much pain, so much of the time, like this woman, Gabby, with endometriosis. She's 27. She has to walk with a cane. And she's applied for disability since the pain is so debilitating. And when I met her, she was about to fly to the US to pay for her second surgery, which costs about $40,000 out of pocket. Lux walked Gabby all the way up the scale on the simulator. She got to a 9, didn't blink.

Lux Perry

OK, do you want to try a 10?

Gabby

Yeah.

Lux Perry

OK, so this is a 10.

Gabby

Yeah, it's like, it feels-- then you can feel a little bit more of the almost stabbies. I'm trying to figure out what this is on my pain scale. I mean, since I'm still standing, I would say this is probably like a-- this is probably like my everyday, like a 6. Yeah, no, I could definitely function with this.

Aviva DeKornfeld

When I tried the machine, my level was 7, average. At levels 8, 9, and 10, I couldn't even speak. I was just silently breathing through the pain. It was so much worse than my cramps. And watching Gabby casually hold a conversation at level 10, I felt like I finally emotionally understood the whole point of the machine.

It's easy to think that because you've experienced a piece of a thing, that you understand the entirety of it. But on the spectrum of period pain, Gabby's experience is as far from mine as mine is from the men. I felt angry that I somehow didn't know any of this before. And when I got home from Calgary, I couldn't stop talking about what I'd seen, asking everyone with the fervor of a college freshman who just learned about feminism, do you have any idea how much pain women are asked to endure?

Before this, I think a part of me felt like these guys were being kind of insensitive dummies, totally unaware of the pain of the people around them. But I guess I was basically as clueless as they were.

Tobin Low

Aviva DeKornfeld is a producer on our show.

Act Two: Face Your Demons

Tobin Low

Act Two, "Face Your Demons." This next story is about a man who wants, more than anything in the world, to be able to see people around him accurately, which is not an easy thing to do. Our producer, Alix Spiegel, has the story.

Alix Spiegel

Love was always important to Jason Werbeloff-- probably the most important thing. As a kid growing up in South Africa, he often imagined his future partner, what the man might look, how close the two of them would be. Jason was crossing his fingers for the standard version of the love story, the one in all the movies.

Jason Werbeloff

I was looking for a soulmate, the one, the person who would understand me, and complete my life, and allow me to fully connect with them on every level, and share every detail of ourselves-- I guess a very Disney way of thinking about life.

Alix Spiegel

So it felt like good news when, at the age of 24, Jason met Marius, an artist with thick black glasses who proudly held Jason's hand in public. This was 2008, and Jason had recently graduated from university with a degree in philosophy. He was out on his own, trying to get a life and a small software business up and running. And Marius was incredibly supportive, confident that Jason would succeed at whatever it is that he tried.

Jason Werbeloff

He looked at me like I mattered. And I remember him laughing a lot. And he had a good laugh, very warm.

Alix Spiegel

But then one night, pretty early in the relationship, Jason had an experience that left him deeply shaken.

Jason Werbeloff

So I remember we were sitting at a table at a restaurant. It was outside the movies. We were going to go see a movie that night. And I remember looking at him, and I thought he was snarling at me.

Alix Spiegel

The expression on his boyfriend's face-- for a moment, Jason thought he saw a look of pure hatred. It was just a flash, but it was unnerving. It felt like Jason had seen a glimpse of something deeper, like the expression revealed some buried inner truth. Jason didn't think he'd said anything to offend his boyfriend. And there was nothing in his boyfriend's voice that was nasty or malicious. But the expression-- Marius looked like someone who clearly meant him ill.

Jason Werbeloff

I remember looking at his face and thinking, I don't want to be anywhere near this person. He feels like a stranger and like he wants to harm me, to hurt me.

Alix Spiegel

Did you say anything to him, like, why are you looking at me like that?

Jason Werbeloff

No, because I thought I must be misunderstanding. And I must just ask him enough questions to find out what he's feeling in order to understand him differently. And I started to ask him questions about how he felt about us, about what he wanted from the relationship. And he reacted in a very confused way. And that was our first fight.

Alix Spiegel

Jason eventually let it go, and the rest of the night was normal. Unfortunately, in the days and weeks that followed, those brief, menacing expressions, they continued. Jason kept catching Marius with a malicious look on his face, a kind of ghoulish snarl. Every time he saw it, he felt his heart race. The look was almost demonic.

It wasn't all the time. And usually, the look would emerge and then disappear just as quickly, so Jason was never absolutely certain that what he thought he saw was what he saw. But still, it upset him almost every time. No matter how many times Marius told him that he was just imagining it, that Marius loved Jason and only wanted the best for him, Jason found the expressions impossible to ignore.

Jason Werbeloff

We used to fight a lot. And it always felt like we had two relationships. There was the relationship I had with him when he looked like someone I could trust and love and the relationship I had with him when he looked awful. And the relationship felt very chaotic. It was good, and it was bad. And it was good, and it was bad. It was good, and it was bad.

I started to research facial expressions obsessively. So I read every book I could in my university's library. There were a few.

Alix Spiegel

About facial expressions?

Jason Werbeloff

Yes.

Alix Spiegel

That's so interesting. Why? And what were you looking for in those books?

Jason Werbeloff

I basically wanted to be able to see a facial expression and be able to recognize what emotion was underlying it, what the person was feeling. I became obsessed with that. Because what I thought he was feeling and what he said he was feeling didn't match. So I became obsessed with working it out. What is it that's on this guy's face?

Alix Spiegel

Marius and Jason were together for four years until, eventually, the expression problem came to a head. Jason says he remembers the exact moment. He'd come into a room where Marius was working on an art project.

Jason Werbeloff

I just hated the way he looked at me. It looked like he was looking at me with contempt. And then a few months later, we broke up. It was just that particular look. It stayed with me.

Alix Spiegel

And it wasn't only with Marius. This happened with other people, too, these flashes of apparent malice. It happened with his mother, some, though not all, of his friends, random strangers he encountered in the world. It wasn't everyone. It wasn't all the time. But it kept happening.

So Jason started to change his patterns. He went out with friends and family much less, even created a work-life where he could spend most of his time alone. He just couldn't stand to see the terrible expressions. And they bothered him most in the context of his romantic relationships, that part of his life where he had so hoped to find unconditional love and support.

Jason desperately wanted a healthy relationship, and so he did the typical thing that people do when they're having trouble in love-- he consulted experts, went to see therapists, one after another.

Jason Werbeloff

I put myself into therapy.

Alix Spiegel

And what did you say to the therapist, and what did they say to you about what the issue could be?

Jason Werbeloff

I said, the person I'm dating or this friend isn't someone that I can trust, isn't someone that I can feel close to. And then the second thing I would say is, what is wrong with me for feeling like that? Is it them, or is it me? But something's very wrong here. And I don't know what it is. But is it them, or is it me?

Alix Spiegel

And what did the therapist tend to say? Was it them, or was it you?

Jason Werbeloff

They would find some story to tell about that. Like, there either was something very wrong with them, or there was something very wrong with me wanting someone who I had such discomfort around.

Alix Spiegel

This went on for 13 years, and Jason withdrew more and more. Every romantic relationship ended the same way, with a look so terrifying, Jason could no longer stand it. In fact, in one case, the look on his boyfriend's face was so disturbing, Jason made him leave that instant, literally went online, paid for an Airbnb and told him to pack.

But then, about three years ago, Jason stumbled on the source of this problem. And understanding what it was made him think about his whole life differently. It started one day when he was on this online forum and got into a conversation with a woman named Catherine. Jason described to Catherine his experience with faces, the strange flashes he saw that haunted him for days afterwards.

And Catherine told him that she thought she knew what his problem was. She said the name of a disorder that he'd never heard of, then told him that to figure out if he had it, he should purchase this special light, which allows the user to change the color of the light through the full color spectrum.

Jason Werbeloff

I thought she was a bit of a quack, to be honest. [CHUCKLES] I thought, she doesn't know what she's talking about. But I'll humor her and get these colored bulbs for my lights. And she said, sit in a perfectly dark room with no other light sources, and put a lamp on either side of you so there's no shadows. And look in the mirror and change the colors on the spectrum and see what you see.

Alix Spiegel

Now, when Jason was a kid and, really, all through high school, he told me he'd felt pretty good about the way that he looked. He considered himself reasonably attractive. But when he was in his mid-twenties, that started to change.

What Jason saw when he looked in the mirror was someone whose right eye kind looked out of place and was much smaller than the other one, and he decided he wasn't very attractive. He was kind of a strange-looking guy. So anyway, Jason sits down in his bedroom and arranges the light, just like the woman said. And then he looks in the mirror.

Jason Werbeloff

And I sort of went around the color dial. And when the color was green, my eye was not smaller and to the side and higher than the other eye. It was where it should be on a symmetrical face.

Alix Spiegel

How did that make you feel?

Jason Werbeloff

I was amazed. I was like-- I was truly amazed by how I looked. And suddenly, things started to pop into place, all of a sudden, in my head. It was because I've always had-- I don't want to sound arrogant, but I've always had a lot of attention from other men.

And I could never understand why because I thought, I don't know what these people are seeing in me. But I'm not a pretty person. I have a really ugly face. Why are they doing this? Which would feed into a paranoia about, are they trying to use me in some way? They can't possibly be attracted to me.

But suddenly, under the green lights, my face was not distorted. I didn't see the face as it was before as a distortion. I thought that was reality. And I was really shocked. I felt thrown, and I couldn't stop staring.

Alix Spiegel

But then Jason turned the dial.

Jason Werbeloff

And the opposite color to green on the color wheel is red. And I took the dial all the way to red, and I stared at my face in the mirror. And my face became truly demonic. Like, I remember it was so intense, it felt like everything around my face went completely black. And the change that I'd seen in so many people over years and years and years was concentrated and magnified and crystallized on my face.

And I looked so terrible. And the difference between myself and the green light and the red light was so massive. It was like a terrifying experience. And I switched the light off. I couldn't look at myself for long. And I cried. I sobbed.

Alix Spiegel

It turned out that Jason had an actual neurological condition. There was a name for what was going on.

Jason Werbeloff

It's this condition called PMO, prosopometamorphopsia.

Alix Spiegel

Say it again?

Jason Werbeloff

Prosopometamorphopsia.

Alix Spiegel

That's a lot of-- a lot of vowels.

Jason Werbeloff

[LAUGHS] And it's actually worse than that because the particular kind I have is called hemi-prosopometamorphopsia.

Alix Spiegel

Not much is known about PMO. It's extremely rare. But for people with the disorder, facial features distort, melting and swelling until the expression of the person is so twisted, it looks demonic, an exaggerated snarl that, for Jason, was impossible to tell wasn't real. And sitting in that dark room, looking at his face in the mirror, suddenly the last 13 years made a certain morbid sense to Jason.

Alix Spiegel

So that was the very first time that you realized that none of this was real, that it was all just a projection?

Jason Werbeloff

Yeah. It gives me goosebumps now to think about it. It felt like the biggest thing of my whole life, bigger than anything.

Alix Spiegel

Since he found out, Jason's been working with a researcher at Dartmouth who studies this condition, a man named Brad Duchaine. And looking back, they realized that all of his symptoms started after he'd had this really bad case of mono in his early 20s, right before he started dating Marius, actually. So they think that that's what caused it. PMO seems like it can come on after an illness or trauma to the brain.

And here's another quirk of the disorder. For some people, including Jason, the distortions are harder to notice if the person he's looking at is wearing glasses, because, apparently, glasses interrupt the typical way that a face is processed by the brain. It's an obstruction that kind of resets things. So if you wear glasses, you can look perfectly fine.

But even knowing all this, it's obvious that it's still surprisingly hard for Jason to put aside something that he's seeing with his own eyes. Jason has literally spent months working with researchers, building a detailed understanding of his disorder and how it changes his visual experience. But still, emotionally, it's just so hard to ignore.

Like one time, Jason and I were talking over Zoom, which is typically a little bit tough for Jason, because if he has to look directly at a face for too long, it'll distort. But fortunately, I was wearing glasses.

Jason Werbeloff

So your face is totally fine now. There's zero changes.

Alix Spiegel

Because I have glasses on?

Jason Werbeloff

Yeah. If you took them off--

Alix Spiegel

So if I took off my glasses, then what happens?

Jason Werbeloff

So now your right eye is moving up, and it's starting to move across. OK, so now this part of your nose is getting dark and pushing in.

Alix Spiegel

The bridge of my nose.

Jason Werbeloff

This top of your nose-- yeah, it flattens into your face. And then this part of your cheek drifts out, bulges out.

Alix Spiegel

Mm-hmm. And do I look angry at you?

Jason Werbeloff

Yeah. Yeah.

Alix Spiegel

And does it affect the way that you feel about me right now?

Jason Werbeloff

Yeah. I try not to let it because I know. My conscious mind knows that that's not real, but my unconscious feels the threat. And when I look at a face front on intensely for a while, my heart rate goes up. My voice catches in my throat. It just feels uncomfortable. It's not a nice experience. And I just instinctively keep looking away and back so that I don't have to see it.

Alix Spiegel

Here, let me put on my glasses. Now, I'm perfectly fine, right?

Jason Werbeloff

Perfectly fine. Yeah, yeah. In fact, for me, you're now a different person. So, I feel quite warm towards this person, but the other person, I didn't really like.

Alix Spiegel

For all those years, all those relationships, Jason had been seeing the world through a distorted lens and didn't know it. Now that he knows, Jason has developed workarounds that he didn't have before. Like when he goes out to dinner, he sits next to a person, not across from them. He also has green lights for his home. All of that has eased things. He even has a partner now. They've been together for a while.

Alix Spiegel

Do you think he's somebody that you could have the kind of relationship with that you imagined as a child?

Jason Werbeloff

No.

Alix Spiegel

Because it's hard to live with somebody or?

Jason Werbeloff

Yeah. We did live together for a while, for about six months, and it was very hard. It's not just that faces change. It's that I've built up a whole lifestyle around that where I go to sleep very late so that I'm not around people, so that I can spend a lot of time by myself. I've built up a whole way of coping with this. And living with someone really undermines a lot of that. And it was very hard for me.

Alix Spiegel

Do you think that you'll ever be able to really, really, really trust a romantic partner?

Jason Werbeloff

Not as long as I have eyes. Yeah.

Alix Spiegel

For the rest of his life, Jason will be surrounded by the faces of demons, and he says his heart will always jump when he sees them because it always, always does. But he knows he doesn't have to listen to those warnings, that the ghouls that he sees are only projections. They mean him no harm.

Tobin Low

Alix Spiegel is a producer on our show. Coming up, a person finds a way to create an almost unlimited quantity of gold. What could go wrong? That's in a minute from Chicago Public Radio, when our program continues.

Act Three: Pump It Up

Tobin Low

It's This American Life. I'm Tobin Low, in for Ira Glass. Today's show, How Are You Not Seeing This? Stories of people struggling to agree about what's right in front of their faces. We're at Act Three. Act Three, "Pump It Up."

So in this next story, the fate of the entire world is at stake. And one person finds himself completely alone, surrounded by people who just do not get what has to happen. The person is our very own David Kestenbaum.

And the thing that he was trying to do was to replace the furnace in his house with a heat pump. The furnace he was replacing ran off natural gas, a fossil fuel. The heat pump, much greener, runs off electricity and can miraculously both heat and cool. When David saw the federal government was offering people $2,000 tax credits to switch to heat pumps, he figured it would be easy. It was not. David here has this, uh, guide as how to get your heat pump and tax credit.

David Kestenbaum

If you want to get a heat pump, you'll start with the usual thing of asking a bunch of HVAC companies to come out and give you estimates. They'll pull up in their little vans with the company's names on the side, poke around your house, measure some things. You'll tell them you want a heat pump.

They'll say they usually install gas furnaces, and why don't you stick with that? You'll tell them you're worried about climate change. And, you point out, the heat pump is actually a little cheaper when you include the new tax credit. You just need to make sure the one they install qualifies for the tax credit, which is when they'll tell you they've never heard of the tax credit, even though it's been around for a year.

Undeterred, after they leave, you'll go to the IRS website because you want to make sure you get a heat pump that qualifies. On the IRS website, you'll find this-- heat pumps with a thermal efficiency rating of at least 75% qualify. That seems simple, except you won't know what thermal efficiency rating is. No matter because it turns out this is wrong.

You'll find out this is wrong from a second IRS document, which is very clear. It says, in order to get your $2,000, the heat pump must satisfy, quote, "the energy efficiency requirements in Q1." You may wonder if Q1 refers to the first financial quarter. It does not.

It refers to question 1 further down in the document, which says that heat pumps must, quote, "meet or exceed the highest efficiency tier, not including any advanced tier, established by the Consortium for Energy Efficiency that is in effect as of the beginning of the year in which the property is placed in service." This will fill you with despair until you see that there is a searchable database of equipment that'll meet the qualifications. That sounds great, but there is no link.

So you google around and find a government website that has a link with instructions for how to use the database. But the link does not load. You will wait five minutes for it to load because you figure it'll sort itself out. But it does not. You try back the next day, and no, it really does not seem to exist.

The only way forward seems to be to look up the actual requirements for you to get your $2,000 tax credit. You go to the Consortium for Energy Efficiency website, where you will finally find it spelled out. And I am going to have to spell here because these are not words. The heat pumps SEER2, EER2, HSPF2, and COP measured at 5 degrees Fahrenheit, all have to be above certain values.

You will also learn here a fact skipped over elsewhere. If you are in the northern US, there are different requirements. You'll need a cold climate rated one. At this point, you will cry because how are we ever going to solve climate change if this is what it takes to get one heat pump installed in one house?

At some point in your searches, you will find something hopeful-- a government web page that seems designed for simple people like you, energystar.gov. It's run by the EPA, and it's friendly, with iStock type photos of parents playing happily with children on couches. This is where you should have been all along.

It's basically a database with a nice, clean design. It shows you a giant list of heat pumps. There are search filters on the left-hand side. There's even a box for tax credit eligible. So you check that. And now it's showing only heat pumps it says are tax credit eligible.

But you soon realize there was a problem. It's not taking into account the fact that the requirements are different if you live in northern states. This seems really bad. It should say, if you live in the north, only these ones. There is a box to check for cold climate certified for people who live in the north. But if you click that, for some reason, it doesn't change the search results.

You will puzzle over this for a long time and finally realize, even though you are asking it to show you things that are tax credit eligible and cold climate certified, it is showing you things that qualify for either, not both. Because you are a journalist, you will reach out to the EPA about this.

There will be a very awkward 20-minute interview with a public affairs specialist named Denise, who will seem surprised by this fact, that when you click on cold climate certified, it still shows you things that are not cold climate certified. Denise will click and see this for herself.

Then, another press person on the call will interrupt to ask, if the whole interview can instead be on background, if they can get you someone else to talk to. They will not get you someone else to talk to. They will not fix the website. Two months will pass. They will send an update saying they are waiting for a possible update from the IRS about which heat pumps qualify.

You do eventually buy what you hope is a heat pump that qualifies. A nice man named Algernon will come over with a crew and install it in a few hours. This is really nice, he will say. I think I might get one for myself.

Tobin Low

David Kestenbaum is our senior editor. Months after David talked to the EPA, just recently, the government did finally fix the website. The URL is www.energystar.gov/productfinder/product/certified-heat-pumps/results. Then you got to click a couple more times on the right things, and then at the end, select the Data tab. Anyway, good luck.

Act Four: I’m Great, Thanks For NOT Asking

Tobin Low

Act Four, "I'm Great. Thanks for Not Asking." This last story's about a person going through something, and they want to share it with their friend. But that can be hard sometimes.

It's a short story by Marie Philips. Here's Marie.

Marie Phillips

We meet at the bar that you chose, 20 minutes from your place and an hour from mine. I'm five minutes early. You're 25 minutes late. You text me that you're on your way and ask me to order you a gin and tonic. The ice is already half melted when you flop down in your seat and say, "My god, it's been forever. How are you?"

But I can see in your eyes that "how are you" is not a genuine question. It's just a piece of perfunctory politeness, a chance to give me a sentence or two before we get down to the real business of the evening, which is talking about you.

I don't know how this happened. We used to share everything. But lately, I feel like you've been slipping away from me and taking less and less interest in my life. So I know that you don't want me to tell you about what it's like to still be living with my mum in a sketchy suburb of South London that you've never visited because you can't reach it on the Underground.

You don't want to know about how broke we got, how we resorted to selling our possessions on eBay or, rather, how I resorted to selling my mum's possessions with her permission because she still finds the internet confusing and asks me what her passwords are 50 times per day. I don't know, Mum. They're not my passwords. Why don't you write them down?

You don't want to hear about how I got catfished by some guy into selling him our beloved cow for some beans, the cow who lived in our garden, which, contrary to what our neighbors say, is completely legal. It's just that most people don't have one. Anyway, I sold her for beans.

And what would happen if I told you how my mum yelled and yelled at me about these stupid beans and how I threw them in the compost heap, and then the next day, there was a beanstalk that went all the way up to the sky? You'd probably just hijack the conversation to say that you're growing tomatoes this year. If you cared, you'd know that my garden is north-facing and tomatoes won't grow there. And I love tomatoes. I really do.

I'm not going to tell you about how I climbed that beanstalk because I don't want to hear about your triathlon training, actually. As it happens, there was a land out there and a house with a giant living in it. But I'm going to keep that to myself. You'd only ask about what the property values are up in the sky in beanstalk land, and would it be a nice place to have a second home.

If you really cared how I am, you'd read my newsletter. And you'd already know that when I got to the house, the giant said, "Fee Fi Fo Fum, I smell the blood of an Englishman. Be he live or be he dead, I'll grind his bones to make my bread." You obviously didn't read my essay on what it was like to be misgendered by a cannibal.

If we were still true friends, maybe I would trust you enough to tell you how I had to hide in the oven, an oven that other humans had literally been cooked in, until the giant fell asleep. And then I stole a bag of gold from him on the way out. I don't want a lecture. In my opinion, it's restorative justice. But whatever.

Anyway, it doesn't matter, because as you were so fond of reminding me, I'm terrible at budgeting, and I canned the lot on the Real Real. Yes, the gold is all gone. So I had to go back up the beanstalk.

I can just picture you stifling a yawn as I tell you how I went through the whole Fee Fi Fo thing again, and that this time, there wasn't a bag of gold, just a goose that lays golden eggs, and how I took her instead. Do you want to know how she is, too? Pretty discombobulated at living in South London. She doesn't like the traffic noise. Plus, as it turns out, it's quite hard to find someone who'll cash a golden egg for you and not ask too many questions about where you got it.

No, I do not want to hear that you have a guy. I still remember what it was like when I called the accountant you recommended, and she told me that she doesn't do jobs that small. Geese don't lay eggs forever. And ours has already started to slow down, fewer and fewer all the time. I doubt you care that once a goose has lost her fertility, she's considered worthless. But for me? Hard identify.

I'm not going to tell you about that, though, because you have no idea how it feels to be approaching midlife while childless. Otherwise you would not keep going on at me about how you were transformed by parenthood. And only now do you know the true meaning of love. You will never know the beauty of becoming close to a bird.

Though, having said that, because of the no more eggs thing, which could happen any day now, she will not solve our financial woes indefinitely. Plus, can you imagine what it's like to be financially dependent on a menopausal goose? No, I don't think you can. Oh, by the way, does your husband still run that hedge fund?

Well, anyway, I discussed it with my mum, and we decided that I had to go back up the beanstalk. She couldn't do it because she has problems with her knees. Not that you asked how she is. So, Fee Fi Fo Fum again. That little sting of being misgendered for the third time, but don't worry about it.

And the long and the short of it is that I stole a talking harp who kept yelling out, "Master, master!" because he has Stockholm syndrome or something. And the giant heard it and chased us down the beanstalk. And I was freaking out like, this is it! I am literally toast! But I got to the bottom first, and I chopped down the beanstalk with my mother's ax. And it came crashing to the ground, and the giant died.

But why would I tell you that? You'd just miss the point completely and ask some irrelevant question, like why does my mother have an ax? The thing is, though, I miss you. We used to have so much in common before you met your husband and started hanging out with his North London friends.

I remember when we were teenagers, and you ran away from home. You were living in a houseshare and working as a cleaner after school. You knew what it was like to go through tough times.

Back then, you would ask me how I am and mean it. I wish I could find the right words, the right question to remind you of that time, to bring you back to me. But instead. I take a sip from my warm white wine and say, "I'm fine. How are you? Do you ever hear from those seven dwarves?"

Tobin Low

Marie Phillips. She's the author of multiple books, including Gods Behaving Badly. This piece was produced by Bim Adewunmi.

["DO YOU SEE WHAT I SEE?" BY HUNTERS & COLLECTORS]

Credits

Tobin Low

Today's program was produced by Emmanuel Dzotsi and edited by David Kestenbaum. The people who put together today's show include Sean Cole, Phia Bennin, Zoe Chace, Michael Comite, Henry Larson, Katherine Rae Mondo, Stowe Nelson, Nadia Reiman, Ryan Rumery, Alissa Shipp, Frances Swanson, Christopher Swetala, Matt Tierney, and Diane Wu. Our managing editor is Sarah Abdurrahman. Our executive editor is Emanuele Barry. Special thanks today to Brad Duchaine.

By the way, Tig Notaro, who you heard at the top of today's show, has a very funny podcast. It's called Handsome. And you can listen wherever you get your podcasts. You can also check out her tour dates at tignotaro.com. Our website, thisamericanlife.org. You can stream our archive of over 800 episodes for absolutely free.

This American Life is delivered to public radio stations by PRX, the Public Radio Exchange. Thanks, as always, to my boss, Ira Glass. We're always talking about the election, which voting bloc might sway the vote. Whenever it comes up, he runs into the room yelling, Gen--

Eughan

(SCREAMING) Z!

Tobin Low

I'm Tobin Low. Back next week with more stories of This American Life.

["DO YOU SEE WHAT I SEE?" BY HUNTERS & COLLECTORS]