901: Is Your Blue My Blue?

The doomed project of trying to translate what’s in your head into someone else’s head. Start a Life Partners free trial https://thisamericanlife.supercast.com/?coupon=VIDEO?utm_id=lifepartners&utm_source=rss&utm_medium=shownotes to watch our new video, A Night of Stories and Improv. (00:00:00) Prologue: A while back, Ira woke up with double vision and learned that he had cataracts. After his cataract surgery, he realized the color blue looked very different to him. Now he always wonders: does everyone see the same blue as I do, or is their blue different? (3 minutes) (00:03:26) Act One: Shaun Bengson has known since he was a kid that he’d very likely lose his hearing as he got older and develop tinnitus. And even after it started, he didn’t do the sensible things that would slow its progression. Shaun and his wife, Abigail, discuss their decisions — and non-decisions — with Ira. And Shaun plays a simulation of what the world now sounds like to him. (27 minutes) (00:32:50) Act Two: Cluster headaches are sometimes called the most painful medical condition. Researchers who study them wanted to know if that was actually true. They asked cluster patients to compare their headaches to other famously painful conditions. Producer Ike Sriskandarajah, who gets these headaches, was excited to read the findings. But should he tell his pregnant wife? (14 minutes) (00:46:35) Act Three: Molly’s mom died suddenly last fall, and it flipped the axis of her world. But one day, a friend told her about a special object that really helped him cope with his own father’s death. Molly decides to track this object down. (8 minutes) Transcripts are available at thisamericanlife.org https://www.thisamericanlife.org/901/transcript / This American Life privacy policy https://www.thisamericanlife.org/page/privacy-policy. / Learn more about sponsor message choices https://podcastchoices.com/adchoices.

• 0:00Speaker 00

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• 0:16Speaker 01

  A quick warning, there are curse words that are unbeeped in today's episode of the show. If you prefer a beeped version, you can find that at our website, thisamericanlife.org.

• 0:27Speaker 02

  OK, so one day, I wake up with double vision. And this was new. And I am not a panicky kind of person in that situation. I am more a kind of lazy, this is probably nothing, let's just see if this lasts a little while and just wait it out kind of person. But this didn't go away. And so I went to doctors, wondering honestly if it was kind of a brain thing, which it can be if you have double vision. What happened is that eventually I got to an eye doctor, who told me that what was happening was that I had cataracts. Cataracts. And they had gotten to the point where they were intrusive enough that they were refracting light and causing double vision. Now, the bad news about getting cataracts is that it means that you're old. I mean, I knew I was old.

• 1:12Speaker 02

  Like, I know I sound kind of youngish on the radio, but I am like over 60. I mean, over 65. I mean, I'm 67, OK. And can I say, like, once you cross 60, there is just no pretending at all. And I am fine with being old. But this was the first truly old person thing that had happened to me. That is who mostly gets cataracts. But the good news about cataracts is, it's a simple surgery. Takes 10 minutes. You're awake during it. You see some flashing lights, and then poof, you're done. And immediately, this is really the incredible part of it, immediately, the world looks different. Everything is brighter, like, literally brighter, like, more light is getting inside your eyes. And the world is much more blue than it's seen before.

• 1:57Speaker 02

  And the way they do it, they do one eye at a time. So they do the first eye. And then you walk around for a week with one fixed eye and one unfixed eye. And so you can hold your hand over each eye, and you can compare. And it's like, I had no idea I was misperceiving the world before the surgery. I had no idea I had cataracts. I had no idea I was missing anything. I mean, it's funny, six years before this surgery, I bought this photograph, this print that I saw online. And then when it arrived, I was really disappointed, because I was like, oh, it's so much more blue in the online picture than in real life. And then after the surgery, I took a look at the picture again, and I realized, oh, no, no, it was the same blue. And I guess what happens is our computer screens sort of pump out so much light directly

• 2:41Speaker 02

  into our eyes, that it cuts through the cataracts, and you see more of the real color. But I had no idea that I was seeing a different blue than everybody else. It's like that stoner cliche, like, when I say something is blue, when I see it as blue, and you say that you see it as blue, are we seeing the same color? Right? There's no way to know. Well, today on our show, we have stories of people who see a different blue from the rest of us, and then who try to get the rest of us to understand what they are seeing. Sometimes very ham-handedly, sometimes going to great, great lengths. Because after all, how do you give somebody else access to inside your brain and really communicate what it feels like and seems like in there? Today, we hear people try.

• 3:25Speaker 02

  From WBEZ Chicago, it's This American Life. I'm Ira Glass. Stay with us.

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• 4:24Speaker 04

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• 4:46Speaker 02

  This American Life, Act One, Even Though You Know You Shouldn't. Sean was told all of his life that he was going to lose his hearing someday. It happened to his dad, his uncle, his grandfather, and great-grandfather, and great-aunts. And when his dad lost his hearing, he was accompanied by a pretty nasty amount of tinnitus. Tinnitus takes different forms. People hear static noise, rushing waves, they hear tones. His dad's version was a loud buzzing sound, like cicadas. It got louder and louder over time. Sean's dad was a pastor, and as he aged, all this got so bad that he couldn't preach anymore. And his dad told him, this is my experience. This is basically the way the color blue looks to me, and someday, this is the way that it really might look to you.

• 5:29Speaker 02

  And so you need to do the things that can protect you from all this. They're pretty straightforward. If you're genetically predisposed to hearing loss, you can slow it down if you avoid loud sounds and wear earplugs in noisy places. And, you know, you're a kid, and adults say stuff like this to you. And you think, yeah, maybe.

• 5:51Speaker 05

  I think that my dad had been telling me it so long, but I also didn't fully believe it. When I first really ingested it was after joining my first, like, real, like, garage band.

• 6:06Speaker 02

  He was 14 or 15. It was him and a few friends. From the start, their very first rehearsal together.

• 6:12Speaker 05

  You know, and just like, everyone just turning up their amps as loud as we could possibly go. And I had my earplugs that my dad had given me that I was supposed to wear. I wore them like two seconds, and I was like, this sucks. And I threw them away. And there was just such a joyous feeling of just like the pure, like, sound of these terrible-sounding classic rock covers just filling my body. And I can remember, after like our first rehearsal, you know, my friend lifted up the garage door, and we all went out and laid on his driveway. And I was just like, man, this is amazing.

• 6:50Speaker 02

  Amazing, he says, partly because of the music, and partly because he was a shy, quiet kid who always had trouble connecting and interacting with other kids. And here he was, playing in a band, together with these guys.

• 7:03Speaker 05

  And so it was just this euphoria of feeling like, I'm like, doing it, you know? Like, I'm making friends, or like, making music together. And that feeling lasted for like a day and a half, two days. And then I realized that the, like, my ears felt like there was cotton in them. And I started to hear this, like, sound. And I realized that it was like my first bit of tinnitus. And I'm feeling like, oh, my god, like dad was right. I was really devastated.

• 7:34Speaker 02

  And he resolved, next rehearsal, I'll be different. So rehearsal day came.

• 7:39Speaker 05

  And I was like, this time, you know, I'm going to wear my earplugs this time. I'm going to be able to do it safe.

• 7:45Speaker 02

  And again, after a minute, he took them out.

• 7:48Speaker 05

  And then a couple of days later, realizing I'd lost more hearing, and just feeling so full of regret and shame and anger, and just like this real self-hatred. It's so, it feels so dumb, because I feel like I had like all the information in my very first interaction with it.

• 8:11Speaker 02

  He basically repeated that pattern for years. So he was a teenager, losing more of his hearing all the time, and he told no one. Kept this from his parents, didn't admit the truth to them until much, much later, when he was an adult. This is why I was so interested in talking to Sean. He's somebody who fell into this spiral of shame and secrecy like people have with, you know, drinking, or gambling, or drugs, or money troubles. But he was just a kid, this introvert, growing up in a church family with a pastor dad, with this growing noise in his head, this constant buzzing in his ears that only he knew about. As a teenager, he would lie in bed at night and try to hear the sound of his own breathing,

• 8:54Speaker 02

  and realize that he could not, which was so scary.

• 8:58Speaker 05

  And so I would just like constantly try to like breathe just like louder. It would just be this cycle of, I can't hear the breath, I like ruined my ears. And the irreversibility of it. There was just this real feeling that I had done like this really grave physical injury to myself. But it really felt secret and shameful.

• 9:22Speaker 02

  It's so rare to know anything about what your future is going to be, and have people that you trust and love telling you exactly what it's going to look like and how you need to handle it. But knowing all that, and actually jumping into action, actually doing the thing you're supposed to do, those are very different things. It can take so long to take action. You tell yourself stories to avoid it. Like, Sean would tell himself, maybe before I get old, they're going to find a cure for this. Some solution is going to drop from the sky to fix it.

• 9:54Speaker 02

  And then, when Sean gets into his 20s, when he turns 23, something interesting happens. He brings a second person into this secret and into his world of denial and magical thinking. He meets his wife, Abigail. That happens at a party. They write a song together on the first date. They marry three weeks later. Not long after that, they quit their jobs and hit the road together as a band. It's just the two of them, a folk punk duo. They're still a band today, The Bangsens. Anyway, here's Abigail.

• 10:24Speaker 06

  Really early on, you know, you just play in these clubs where it's so loud. It's so intense. And then we'd kind of fall out onto the sidewalk, you know? And you would start opening your mouth really wide and tugging on your ears and kind of looking around. And you'd start snapping in both of your ears.

• 10:49Speaker 02

  Like you're snapping your fingers by your ears.

• 10:51Speaker 06

  Yeah, back and forth and kind of, and you know, I was in love with you. I didn't really ask a lot of questions. It's just like, cool, that's the thing he does. But I feel like as time went on that I sort of understood that that was a hearing test. And often what it meant was that we had done damage. And yeah, I feel like we met so young that we were still a little bit nihilistic about it even, that it felt like, well, if it's gonna go away, let's like use it up in a in fire, you know? Let's like use it up joyfully. And there's something to that.

• 11:33Speaker 06

  But we were also reckless together.

• 11:38Speaker 02

  They would play these clubs, and Sean's attitude at the time was, however loud the other musicians had the monitors, they could do. Whatever anybody else did, he could do.

• 11:48Speaker 06

  And I was like, hell, yeah, you know, of course you can. So I think it actually felt like being on his side to be like anti-earplug, anti-care, you know? Like, it felt sort of like being a good teammate to be on the side of this sort of recklessness. I don't know, when we first fall in love with somebody, it's like, a way to love them is to see it their way, you know? And to kind of embrace even the fiction that they're telling themselves.

• 12:24Speaker 02

  Also, like, nobody wants to be the other person's minder. Do you know what I mean? Like, you're not his mom, you know?

• 12:33Speaker 06

  No, I definitely wanted to be like sexy and interesting. I was like a new wife. Who wants to be that person, like nagging? Oh, my God, you know? Like, remember, put in your earplugs, honey.

• 12:48Speaker 02

  When you make the kind of choice that Sean had made as a teenager, to ignore the reality of what he was up against. At first, when you're little, it's just your choice. But as you grow up, it becomes a choice that other people you love get dragged into. And then they have to figure out how they're gonna handle it. Abigail says that she understood that Sean was gonna lose his hearing someday, but to talk about this directly and what it would mean, in those early years, when they were starting off on this adventure, they were in love and they were playing music, it just felt like they would be talking about the end of their lives.

• 13:22Speaker 06

  It was like having a very unsexy conversation about who would be when we were close to death or something like, and it felt like, well, once your ears reach a certain point, music will be over. And if music is over, who are we? What does that mean? And when you're 23 and you're like, wow, I might be, you know, fully deaf when I'm 50. That feels like, well, so when I get to the moon, I might not be able to hear anymore.

• 13:59Speaker 02

  But as the years went on, Abigail said that she would have moments all the time where she would think, the speakers are too loud. This is bad. She should say something. But, you know, there were these clubs, and they were the folk band at the rock clubs. Already, they felt like outsiders. Neither of them wanted to be too demanding or uncool or ask for special treatment, so she kept it to herself. And all through the late 20s and into their early 30s, Sean's hearing deteriorated. And to give you a sense of what that means, at some point, Sean created a little audio demonstration of what the world sounds like to him, because he wanted Abigail to understand what he was hearing. So he made this for her. And then sometimes, these days, when they're doing a show on stage, he'll do a version of this for the audience in the theater.

• 14:44Speaker 02

  And basically, he lost the ability to hear high-frequency sounds first. And the ability to hear those sounds was replaced by a hum at the exact same frequencies that he'd lost.

• 14:56Speaker 05

  So basically, as you lose frequencies, each frequency that you lose becomes part of the noise.

• 15:03Speaker 02

  And that noise, that cicada-like humming, it never goes away. So again, he can't hear certain frequencies, and those frequencies become part of this permanent humming sound. Okay, so let's hear it.

• 15:16Speaker 05

  All right, so I'm gonna start bringing it in now.

• 15:19Speaker 02

  Okay, yes, so I hear the buzzing for sure.

• 15:23Speaker 05

  Okay, great. I can't hear these frequencies anymore. So I think this is about what my tinnitus sounded like when I was 15, when I was, you know, when it was really starting to be ever-present.

• 15:35Speaker 02

  Okay, so what I'm hearing is there's like a buzzing, but your voice is very, like, I can still understand every word you're saying pretty easily.

• 15:43Speaker 05

  That's great. Yeah, my voice is low enough that it's not affecting it too much yet. And then, as we go on through the years, okay, I'm bringing in more tinnitus, and you'll probably start noticing that some of it's coming out of my microphone now.

• 16:04Speaker 02

  Oh, yeah, you're harder to understand.

• 16:07Speaker 05

  And then consonants are getting harder to understand. You'll notice that, I think particularly with like in Sean versus like in Tony or whatever, you know, those consonants are getting harder.

• 16:21Speaker 02

  He continues like this, removing frequencies from his own voice and adding those frequencies to the constant hum that you hear running behind him.

• 16:30Speaker 05

  So this is about what it sounds like in my head right now. Consonants are getting harder to understand.

• 16:36Speaker 02

  I mean, you sound like somebody like underwater or something.

• 16:40Speaker 05

  Yeah. It was such a gradual onset for me that this is just how the world sounds.

• 16:49Speaker 02

  I literally have no idea like what you just said. Say it again more slowly.

• 16:53Speaker 05

  It came on for me so gradually, my hearing was, that this is just how the world sounds.

• 17:03Speaker 02

  Yeah.

• 17:04Speaker 05

  I learned on my hearing test that at a normal conversational volume, I can understand about 20% of the conversation.

• 17:18Speaker 02

  If you didn't get that, he said that his hearing test shows that at a normal conversational level, he can understand about 20% of what's being said. And the tinnitus noise is so loud, Sean explained that it's usually easier for him to understand somebody if they're standing on the street talking than if they're in a quiet room. He said that's because when we're on the street with all the traffic and the other noise, we all talk louder. And when we talk louder, he can hear us more over the tinnitus noise in his head. And one of the things that's interesting about this demonstration is that Sean can not only show Abigail what he's hearing, he can show himself what it's gonna be like in the future.

• 17:56Speaker 05

  Okay, so now we're gonna go into the future. You know, let's see here. Uh, decade, 15 years for me?

• 18:09Speaker 02

  This is 15 years from now for you.

• 18:11Speaker 05

  Maybe 10 years. This is about when my dad stopped playing music with other people.

• 18:17Speaker 02

  So I say that again more slowly.

• 18:19Speaker 05

  We think this is what it sounded like to my dad when he stopped playing music with other people.

• 18:26Speaker 06

  I'm just gonna repeat what he says.

• 18:28Speaker 02

  Okay, good.

• 18:29Speaker 06

  Yeah, this is about where my dad's ears were when he stopped being able to play music with other people.

• 18:36Speaker 02

  I should say that Abigail can do that, because she's in the same room as Sean is. So she's hearing his voice without the processing that we're all hearing. I'm in a different room, listening on headphones. So we're 10 years or maybe a little more into your future. Then what?

• 18:52Speaker 05

  And then, we should go into the future. Hmm. Hmm. Hmm. Hmm. Hmm. Hmm. Hmm.

• 19:04Speaker 06

  As we go farther into the future, I think this is about what it sounds like for Dad now.

• 19:10Speaker 05

  Hmm. Hmm. Hmm. Hmm.

• 19:18Speaker 06

  And this is most likely where my ears are heading.

• 19:20Speaker 02

  I have to say, this is so strange. It's almost like, it's almost like, like, it's impossible to hear words. And it just sounds like pulses of noise more than speech.

• 19:35Speaker 06

  That's right. All of the sonic information you need to understand language is pretty much gone.

• 19:40Speaker 02

  All right, let's, let's come back to normal conversation now.

• 19:45Speaker 05

  Back to the present and there we go. Goodbye, tinnitus.

• 19:51Speaker 02

  Wow.

• 19:53Speaker 02

  Sean, you said you like invented this demo first to show Abigail what you're hearing. Abigail, when you first heard it, I mean, you'd been with him for years already and you kind of knew the basic idea of what he was hearing. What was it like to actually hear the demo?

• 20:10Speaker 06

  Um, it's very stark, just seeing how hard he had to work.

• 20:18Speaker 02

  I mean, did you have a feeling of like, like, oh, I knew it's bad, but I didn't realize it was this?

• 20:23Speaker 06

  Yeah. Yeah, I did. I mean, it's like, there's another, this whole other huge truth, like another animal in the room with us all the time.

• 20:36Speaker 02

  Yeah.

• 20:36Speaker 06

  And he's navigating it often alone.

• 20:42Speaker 06

  It's hard. Like, I'm not, we both really aren't interested in thinking about it as like, isn't that very sad? You know, it's stark. It's like, it's a big difference.

• 20:56Speaker 02

  Yeah.

• 20:58Speaker 06

  But hearing your tinnitus is not a demonstration of tragedy. It's just a sort of stark invitation into your experience.

• 21:09Speaker 02

  So, this is where Sean understood he was headed. He knew all of this. His hearing was getting worse and worse. It was hard for him to talk to people if Abigail wasn't there, helping and repeating things. And when she wasn't there, he would pretend to hear what people were saying and he would nod along. And then often he would say something, thinking that he was understanding the conversation. And then everybody would start laughing and saying, I can't believe you said that, because what he said was so inappropriate and off topic. And he says, sometimes he would never actually learn what his mistake was and what they were talking about. And a solution was right in front of him. He could slow this down. He could wear earplugs. At other shows, he could have them lower the volume of the speakers on stage, which would do less damage to his ears. But still, he could not bring himself to do it. He was 32 years old.

• 21:55Speaker 02

  And then?

• 21:56Speaker 06

  And then we became parents.

• 21:58Speaker 02

  They became parents and they had a boy. And they thought that he would probably inherit ears just like Sean's, because that's how it goes with the men in Sean's family. And they wanted their son to grow up with an example of somebody dealing with hearing loss in a much more thoughtful way than Sean was doing it. And they also needed to change for another reason, something that happened their very first night as parents. Their son, Louis, was born with one lung that would not inflate. And he was rushed off in an ambulance from the hospital they were at to a bigger hospital. And Sean went to the intensive care unit with the baby while Abigail was in a hospital room, recovering.

• 22:33Speaker 05

  But that also meant I lost my translator. And now, like, I'm alone with a child who is maybe not going to make it. You know, they said, they thought they were going to have to airlift him to another state to have a lung transplant. And all the nurses were talking with me about all this, like, important stuff. And like, I couldn't hear them. You know, I just like, could not follow the conversations. And I just felt like such terrible guilt and shame that I had let this go on so long. And now, my, like, child's life might be on the line. And I, like, couldn't hear well enough to be able to, to help.

• 23:18Speaker 05

  I really felt like this has to change and I have to wake up.

• 23:24Speaker 02

  His son's lung started working. A transplant was needed. He was fine. But it shook up Sean.

• 23:30Speaker 05

  It felt, it does, it does have a little bit of like an addict, rock bottom, like, feeling. Like, I had really ridden this pony as far as it would, as it would go.

• 23:39Speaker 02

  And so what'd you do as a result?

• 23:42Speaker 05

  I started wearing earplugs. I like, that was the first thing, is I just started wearing earplugs. I started having it be like a main conversation whenever we would start working with people.

• 23:54Speaker 06

  Getting really vocal about stuff that we had been, that we were scared, where people would think we weren't cool, or weren't like, down, or weren't flexible, like, in the music scene, you know, that like, we were hard to work with because we had these particular needs, we had special needs, you know?

• 24:13Speaker 02

  Turn the music down, basically.

• 24:15Speaker 06

  Yeah, just to like, turn it down. And, and like, really specific work with monitors.

• 24:20Speaker 02

  It's so funny, because in music, like, there's so many cliches about like, turn it up, crank it up. And there's no cool version of

• 24:27Speaker 06

  You got it, man.

• 24:27Speaker 02

  Turn it down.

• 24:30Speaker 06

  They should go, put the speaker to negative one.

• 24:33Speaker 05

  That's right.

• 24:34Speaker 02

  It's like, it's final time.

• 24:35Speaker 05

  That's right.

• 24:35Speaker 02

  Instead of eleven.

• 24:37Speaker 06

  That's who we had to turn into.

• 24:44Speaker 02

  In a way, it's the oldest story in the book. Somebody has a baby and then decides, now it's time to clean up their act. That was 10 years ago. And I suppose the story could stop there. After all those years, Sean starts protecting his ears. But crazily, after going through all that, there was a second thing that Sean really needed to do to deal with his hearing loss, something that he had been advised to do years before this, and he still would not do it. He wouldn't get hearing aids. For all the reasons that you hear people say, he'd seen his father and grandfather get them, and at some chemical level, he was like, I am not ready to be like that. That is the beginning of the end. That is old age.

• 25:27Speaker 02

  And so, when I first sat down with Sean and Abigail in the studio, they were like people trapped in quicksand with this decision.

• 25:35Speaker 05

  It's been a gentle, like, I'd say, like, four years ago, I was like, maybe it is time for hearing aids. And then the year after that, I was like, all right, it's probably hearing aids time. And then last year, I was like, maybe we'll get hearing aids this year. And then this year, I'm like, it's time. But I, no, I haven't. I have not been able to.

• 25:53Speaker 02

  Oh, my God, Abigail, how are you not so annoyed?

• 25:59Speaker 06

  Aw.

• 26:01Speaker 06

  Listen.

• 26:06Speaker 06

  I don't know why I'm crying.

• 26:11Speaker 06

  I really love you. I'm really in. However you want to do it, I'm in.

• 26:20Speaker 06

  You know?

• 26:23Speaker 02

  That was recorded in March. Abigail made a decision that she was not going to pester him into this, or become his minder. She thought that was a dangerous path and could so easily make them less close. And I agree with that picture of how relationships can go to hell. And I remember leaving that interview, feeling so much admiration for how she was holding the line on that. And then, finally, over the summer, at the age of 43, Sean got hearing aids. I invited them back into the studio to talk about this. And they told me that part of the reason that he did this was me.

• 26:57Speaker 05

  Talking with you and feeling like, this is really a little ridiculous.

• 27:03Speaker 05

  And it was that, and that combined with just how genuinely I was struggling. Like, we were working with collaborators and I was just not able to hang.

• 27:13Speaker 02

  Like, literally, like, it was just hard to communicate?

• 27:15Speaker 05

  Yeah, I just couldn't do it. I was just, I was just sitting there quiet. And then we got the email from you that you had just gotten your hearing aids.

• 27:24Speaker 02

  Oh, right. Hello, America. I don't just have cataracts. I also got hearing aids this year. I told you I'm old. Hearing aids are great, by the way. Total recommend.

• 27:35Speaker 05

  Which I had no idea that you were even on that journey.

• 27:38Speaker 02

  Right. So, when I got my hearing aids, I thought of you guys. And I was like, oh, I wonder if you guys got your hearing aids. I sent you guys an email.

• 27:44Speaker 06

  That's right.

• 27:44Speaker 02

  Saying like, oh, I just got hearing aids. And then you reached out to me to be like, who'd you get them from? Did you like them?

• 27:50Speaker 06

  Yeah, that's what happened.

• 27:52Speaker 02

  If you're listening to this, and there's somebody in your life who needs hearing aids, I guess, you know, send them to me.

• 28:01Speaker 02

  Sean got his hearing aids over 22 years after an audiologist first told him that he needed them. Which is more than most people, but most people do take a while. There's studies out there that have looked at this. One big, long-term study found that the average time that people wait, between the diagnosis that they should get hearing aids and actually getting the hearing aids, was about nine years. Sean had surrounded this decision with so much denial, so much fear. And now?

• 28:29Speaker 05

  My ears aren't restored, but I am hearing things I haven't heard in decades.

• 28:35Speaker 02

  Like daily life is different.

• 28:37Speaker 05

  Daily life is different.

• 28:39Speaker 02

  When he explained to me how, I have to say, I was surprised at the sprawl and variety of daily things that come up, and just how important some of them seem. Like, for example, staying up late with his sister on a visit, in the kitchen together, having one of those intimate, late-night talks that would have been literally impossible for him before, because quiet conversation was the thing that he could not hear.

• 29:00Speaker 06

  The first night you brought your hearing aids home.

• 29:03Speaker 05

  Yeah.

• 29:03Speaker 06

  And then we had this moment where-- we live in a studio, so our kids were asleep right there, and we were just trying to talk about the day.

• 29:12Speaker 02

  In the past, two kids asleep in the same room, they might try to talk.

• 29:16Speaker 05

  And I just couldn't. And we would have to text, or I would need her to speak too loudly, and a child would wake up.

• 29:23Speaker 02

  In best circumstances in those days, Sean had so much trouble hearing what Abigail was saying.

• 29:28Speaker 06

  In all honesty, I'm not the most patient woman, and I will give up. I'm embarrassed to say, but I'll give up if there's a lot of repetition sometimes. It'll be like, "Oh, honey, you look great." And he won't hear me, and then by the end, I'll be like, "You look great." My tone will be sort of ferocious, or something that was supposed to be sweet will be frustrated and crappy. And then that night with the hearing aids, we just had this sweet, gentle, easy conversation. And then later, I was like, "Oh, my god. I can't believe that happened."

• 30:11Speaker 02

  Does this make you wish you had done this years ago?

• 30:13Speaker 05

  Yeah, I do. I do wish I had done this years ago.

• 30:17Speaker 02

  They're both learning ASL, preparing for a future that they know, both looking out pretty squarely.

• 30:22Speaker 06

  When you have a lot less hearing, we're going to be great. We're going to be different. But who wants to write the same song over and over again, anyway?

• 30:35Speaker 02

  Sean says that one thing that made all this possible was that he said he needed to be able to picture himself with hearing aids, like how he'd still be able to be a musician and function. And that took a while. Sometimes, even when the evidence is right in front of you, it can take some time to adjust.

• 31:02Speaker 02

  All right. Why don't we close this out with one of the Bengsens songs?

• 31:51Speaker 02

  The Bengsens, Abigail and Sean. That song's actually from a show that they wrote called Ohio, where Sean talks about some of all this stuff onstage, and actually does the tinnitus demonstration. And they do a bunch of songs, and it's played in different cities over the years. They're bringing it to New York City in January. If you're curious, go to Bengsens.com. That's B-E-N-G-S-O-N-S dot com.

• 32:24Speaker 02

  Coming up, what's worse? An eye socket full of red-hot coals while a mule kicks your face for hours? Or having a baby? Or kidney stones? Or being shot with a gun? Okay, scientists have actually studied this question. Their data in a minute, from Chicago Public Radio, when our program continues.

• 32:49Speaker 03

  Stay tuned for the following announcements and messages from our sponsors. This message comes from Whole Foods Market. Host Thanksgiving with industry-leading quality standards from Whole Foods Market. There are no antibiotics in their meat department, ever, so carve up turkey and spiral-cut ham with peace of mind. Shop organic sides like stuffing mix and cranberry sauce from 365 Brand. And all their delectable pies are made with no high-fructose corn syrup. Gourmet Thanksgiving flavors with the quality you want, only at Whole Foods Market. This episode's sponsor is HubSpot, which offers the following message. What if, instead of updating your CRM, your CRM updated you? No catching up on manual edits, no more guesswork.

• 33:31Speaker 03

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• 33:46Speaker 02

  It's This American Life, I'm Ira Glass. Today's program is your blue, my blue. And yes, counterintuitively, we are naming the program that, and it has nothing at all to do with this week's midterm election results. This is an episode entirely about things that are in your head, and you wonder if you can communicate those things in your head to somebody else who does not live inside your brain. We have arrived at Act Two of our program. Act Two, Everybody Hurts. Okay, so everyone knows you're not supposed to compare your pain to someone else's pain, right? No good can come of that. But one of our producers, Ike Sriksandaraja, recently came across this survey that tries to rank physical pain, and specifically, the pain that people get from cluster headaches.

• 34:30Speaker 02

  Cluster headaches, if you've never heard of these, are sometimes called suicide headaches, because the pain is so severe. This survey held special interest for Ike, because he gets cluster headaches. Here he is. For me, it started in seventh grade. I was sitting at my desk, listening to the teacher, and then suddenly, I felt this wave of knockout pain crash directly behind my right eye. I wondered if I was dying. And then, it was gone. But it wasn't. It kept happening. And it always came in clusters. Usually, a cycle would last six weeks, four to five times a day, 90 minutes at a time,

• 35:12Speaker 02

  during which, the right half of my face goes slack, my legs spasm, sometimes I'll throw up from the pain. I've tried a dozen medications, designed my own home remedies, but a lot of times, I just wait till it's gone. And afterwards, I feel hollowed out, a little lonely. I don't know anyone else who this was happening to. And it was hard to explain how painful these attacks were. Then I saw this study that compared clusters to better-known extreme pain. And I was like, yes, here's empirical proof that it's this bad. And I wanted to talk to the people in it. The way the researchers did this survey is they found some unfortunate people who get

• 35:57Speaker 02

  cluster headaches, and also suffered some other physical pain. Then they asked everyone to score how painful each experience was. The result is a comparable index of the most painful human experiences. In the survey, one experience really jumped out at me. 25 people got shot with a gun and lived to compare. And that's what happened to Eric.

• 36:23Speaker 05

  Well, I mean, there's a very loud report in a closed vehicle, the ear-deafening blast.

• 36:31Speaker 02

  He was sitting in his car, taking apart his gun, in the middle of telling a joke to his friend, when--

• 36:37Speaker 05

  The first clue that I had been hurt wasn't the actual getting shot part. It came after I had started noticing I was actively bleeding.

• 36:51Speaker 02

  Eric, may I ask, and I know this isn't the point of the story, but what was the joke?

• 36:57Speaker 05

  Do you know what the funniest part about it is? To this day, I've racked my head about it. I can't remember, but I remember the punchline being the firearm going off.

• 37:07Speaker 02

  He'd shot himself in the thigh. Somehow, miraculously, there was an off-base Army medic in the parking lot. She stabilized the wound until an ambulance arrived. He says, "It actually didn't hurt so much at first, but then, the pain really got going." And Eric, I want to be clear, really felt the pain, fully.

• 37:29Speaker 05

  I refused the opiates. I didn't want them. I was already eight years sober at that point in time when I had gotten shot.

• 37:36Speaker 02

  Oh, wow. So you had an unmedicated gunshot wound?

• 37:43Speaker 05

  Yeah. They gave me ibuprofen.

• 37:46Speaker 02

  Oh, okay.

• 37:46Speaker 05

  And that night, I remember screaming that night for help, because it was getting unreal.

• 37:53Speaker 02

  Eric, on a pain scale, 0, no pain, 10 being the most, how bad did it get with the gunshot?

• 38:02Speaker 05

  I would say a seven or eight.

• 38:06Speaker 02

  Okay, seven or eight for a gunshot. His cluster headaches start at seven or eight, and get a lot higher.

• 38:15Speaker 05

  My sevens are usually me grinding my face in with my fist or a rock. This last month, I almost broke my nose pressing on my face. I could feel the cartilage trying to break every now-- And then I'll go up roots at 10. And I, I know that I'm hitting 10 because I'm gasping for air, rocking back and forth and, and trying to induce a trance. Because there's nothing that's going to stop it. And, um, when I get to 10, um, when I know they're coming.

• 38:51Speaker 02

  Yeah.

• 38:51Speaker 05

  I'll, I'll, I'll get in my car and I'll go somewhere secluded. I'll, I'll get away from everyone because it's traumatizing.

• 39:01Speaker 02

  I get that. You don't want people to see you writhing in pain. And that pain? One science writer, who also gets this kind of headache, described the pain as something, quote, "A tourist would take pictures of as a towering monument or a new world wonder." It's just that big. And yet also totally unseen and mostly unknown. Here's what we do know. Clusters affect about one in 1,000 people. It's about as common as MS or lupus. They think it's caused by a dysfunction in the hypothalamus, the body's inner clock. And for a lot of people, cluster headaches hit like clockwork.

• 39:45Speaker 02

  They're eerily precise. The most common time for a headache is 2:00 AM every night. And that's true across countries and time zones. The hypothalamus then connects to nerves in your face, causing severe pain around one eye. For Eric.

• 40:03Speaker 05

  It felt like my eye socket was full of red hot coals and a mule was just kicking me in the face repetitively for hours on end.

• 40:13Speaker 02

  So that's his cluster headache pain. Which pain do you think you can endure for longer?

• 40:21Speaker 05

  The gunshot for sure.

• 40:23Speaker 02

  Eric gets six to seven cluster headaches a day. So in other words, it'd be about as painful, maybe even a little easier, for Eric to get shot several times a day than to have his cluster headaches. In the survey, gunshot wounds received an average pain score of six versus cluster headaches, which got 9.7.

• 40:54Speaker 02

  But of course, this is a whole survey of human pain. 17 varieties of affliction. What about the other things people say hurt more than anything? Like kidney stones? They're in the survey. Gary, he's had them twice. The first time they hit, he couldn't move. I, I would probably have to put that somewhere between a seven and eight. Okay. Say seven and a half. Can I ask you about your, your cluster headaches? Sure. How bad did they get? I'll say I've got a 9.5 or 9.9, but never a 10. And the only reason I never say I have a 10 because I can always think that there's the level where it gets worse.

• 41:39Speaker 02

  In the survey, people who'd had kidney stones and cluster headaches gave kidney stones 6.9 on average. Gallstones, if you're curious, 6.3. There's a lot of ways to get hurt in life. I called around and talked to a college football player who had concussions and broken bones, another person with ruptured ovarian cysts, one lady with endometriosis. I talked with a guy who had a toothache so bad, he tried to pull his own tooth out. They all said their clusters were worse.

• 42:18Speaker 02

  There's one more kind of pain, of course, that everyone who goes through it seems to describe as the worst pain they have experienced. I'm talking about the pain of childbirth. How's that compared to cluster headaches? A coworker who's experienced this pain told me, I lost her on this one. Simply asking the question, I lost her. Two others thought bringing it up was sexist, or at the very least deeply insensitive. Regular listeners of this show may have heard our stories about the well documented phenomenon of discounting women's pain. And I believe women. Here's Ashley, talking about the early stages of labor.

• 43:00Speaker 02

  The birth was almost entirely unmedicated.

• 43:04Speaker 06

  And, oh, I felt everything.

• 43:08Speaker 02

  Oh, my God.

• 43:09Speaker 06

  Absolutely everything.

• 43:10Speaker 02

  I can see it in your face.

• 43:12Speaker 06

  Yes.

• 43:13Speaker 02

  Yeah.

• 43:14Speaker 06

  I would put labor, active pushing, as a 9.5 out of 10.

• 43:21Speaker 02

  Is 9.5 the moment of crowning?

• 43:25Speaker 06

  The tear. I, I would say the tear itself was 9.5.

• 43:31Speaker 02

  Ashley has given birth exactly twice and suffered from cluster headaches hundreds of times.

• 43:38Speaker 06

  Cluster headaches, a different type of pain. And I, I would, I would still put cluster headaches as a 10 out of 10.

• 43:49Speaker 02

  I should say, she says these two things are impossible to compare. One ends with a baby. The other has nothing good about it at all. And it happens all the time. But for her, the headaches are worse. To me, this survey seemed useful, but should really come with a user warning. I've learned that there's a time and a place that's appropriate to share the survey results with someone else. Especially if it's your wife.

• 44:19Speaker 05

  I will say that when you first introduced the comparison to me, I was nine months pregnant with our second child.

• 44:33Speaker 02

  Back then, I thought the timing made a lot of sense. Emma, my wife, you just heard her, was pregnant and pretty uncomfortable. And I was having these headaches, also pretty uncomfortable. So I thought, hey, this article is talking about both of us. It seems like something she might want to know about.

• 44:52Speaker 05

  You said, oh, I read this, you know, I read this study that cluster headaches are the most painful thing that a person can experience. That I don't remember exactly how you compared them to childbirth, like are more painful than childbirth.

• 45:06Speaker 02

  Oh, my God. I guess I shouldn't have said that.

• 45:09Speaker 05

  It was something just like that. And I, my reaction was kind of like, oh, okay. And so I was annoyed. I think it's like saying it ranks above childbirth really rubs people the wrong way.

• 45:25Speaker 02

  If you had to rank my response to your pain, 10 being empathetic and zero being callous, what ranking would you give me?

• 45:41Speaker 05

  I don't really want to put a number on it. I will say that you were an excellent partner in labor. Though I will say it's true, for many years, responses to like illness or whatever else was kind of a little dismissive. I wouldn't have put you at a 10.

• 46:04Speaker 02

  Closer to zero than 10?

• 46:06Speaker 05

  I, I don't know. Say it's a, say right down the middle.

• 46:12Speaker 02

  Five.

• 46:13Speaker 05

  I think we could say, I think we could say five.

• 46:17Speaker 02

  That's the past or right now?

• 46:19Speaker 05

  No. I don't know. I think that you've, and I think you've gotten better.

• 46:24Speaker 02

  Six?

• 46:25Speaker 05

  I don't know. Don't make me do this, please.

• 46:29Speaker 02

  Let's just agree. If you want someone to empathize with you, don't try to compare your pain with theirs. Especially with empirical data backing up that yours is worse. It does not engender any empathy at all. But you know who does get it? Other people with cluster headaches. Before this story, I'd never talked to any. Meeting them meant more to me than I expected. One of the first I talked to was a retired New York City firefighter who got his first cluster attack right after 9/11. We compared notes, how long it took to figure out what was happening, how long before we

• 47:10Speaker 02

  learned that oxygen really works, for us, anyway. I just got my first tank this year. He figured it out early. Helps if you work in a fire station and they're surrounded by the stuff. After our conversation, he gave me a hug and told me, I know your pain. And he did. It felt like empathy on a molecular level. I don't have anything to compare it to.

• 47:45Speaker 02

  Idris Kandaraja is one of the producers of our show.

• 47:52Speaker 02

  Act three, I'm blue, daba dee, my mom died. So I'm putting together today's show about things in your head that can be hard to get across to other people. It came to all of our attention that our production fellow, the person who comes here to our show for six months to work with us and learn what we do, Molly Marcello, had something like this herself. She had this thing in her head that was a very different form of what was in other people's heads, and it was not so clear to her how to handle it. Here she is. When I started working here, meeting all these nice new coworkers, they all had so many questions. And no matter what anyone asked me, my brain only had one answer. My mom died. What stories do you like to cover? My mom is dead. How are you liking New York?

• 48:37Speaker 02

  Well, um, my mom is no longer here. What do you think you'll do after this fellowship? Um, I combed the front and back of my hair today. For reference.

• 48:47Speaker 06

  Mom is dead. I find myself constantly rooting around for a second answer. Got any weekend plans? Weekends are good. Communicating can be like offering up a dusty tampon at the bottom of my bag when I was asked for a stick of gum.

• 49:10Speaker 06

  My mom died suddenly, three months before I started my job, on a Monday in October. A perfectly ordinary day to make an exit. At her moment of death, I imagined her saying her favorite word: shit.

• 49:25Speaker 06

  It would be nice to know the mechanics of what happened exactly, as if I could just understand the mistake here, then I could bring it to management, run it up the chain. But sometimes, your mother's heart just stops.

• 49:43Speaker 06

  The only time I feel relieved from the near-constant interruption of my mom is dead is when I get to talk about it. And the only people I like doing that with are other people with dead parents. I was talking with one of them, a coworker here at the show, Mike Comitay. He'd mentioned in passing that his dad was dead, and I cornered him about it over lunch one day. "More people should experience this," Mike said. We laughed, because it's such a dark, forbidden thought. We were talking about this impossible gap between what was in our heads and what was in everyone else's, when he mentioned this thing that he said had been incredibly helpful to him. After his dad died, his friend sent him a zine about grief.

• 50:27Speaker 06

  Reading the zine was one of the first times it felt like someone understood what he was dealing with. But Mike didn't have it anymore. He'd passed it to an acquaintance of his, someone who'd told Mike how he was going through a big loss, too. Months after mailing this guy the zine, Mike found out what the big loss was. The guy's cat had died.

• 50:50Speaker 06

  When Mike told me this story, I said the following out loud: "Unfucking believable." Then I thought, "That's my zine. Mike would have given it to me if he hadn't wasted it on that cat guy." I know that's not exactly generous or kind or even sensible, but apparently, that's the stage of grief I'm in. The "my dead mom counts more than your dead cat" stage. I wanted this goddamn zine. Not because I particularly thought it would help me. I'm wary of grief books. If it did, OK, that would be great. But mostly, I needed to right this wrong. Also, it was nice to have a goal. So I set out to get it back.

• 51:36Speaker 06

  Mike agreed to help me in my quest. Unfortunately, he did not remember the title, the author, or most of its content. He couldn't just Google it. So he tried the last place he saw it: Cat Guy. Sent a message on my behalf. "Hey, remember that zine I sent you a while back? Any chance you held on to it?" Crickets. We follow up with more emails, social media, LinkedIn. And just like our dead parents, the Cat Guy gives us no response.

• 52:07Speaker 06

  Mike then goes back to the person who sent him the zine, and she remembers who wrote it: Chelsea Granger, an artist who made it in 2019, after her own mom died. We got on the phone. A few days after she died or something, I was in my childhood room being like, "Oh, I'm gonna make a zine." Like, there was no question. It starts off with, like, "My dad called and said my mom is dead." "My dad called and said my mom is dead." Hands down, the most positive I've ever sounded about the worst moment of my life. This was actually kind of thrilling. Chelsea was the first person I'd met whose mom had also died out of nowhere. And that zine she made, she actually ended up making 12 whole months of newsletters about grief. Where does the-- OK, where does the newsletter live now?

• 52:52Speaker 06

  Like, is it saved on a hard drive? No. I, like, actually, I feel like I don't even have scans of it. Well, shit. But what Chelsea does have is a folio of her original collages, all in tiny piles, not organized or laid out the way they were in the zine. And incredibly, she offers to resurrect all of the parts, putting them back together from memory, like a 1,000-piece jigsaw puzzle. She recreates all 12 months of the newsletter, then copies staples and mails them to me. When I have it, I carry it up the steps to my apartment. And the whole thing feels like it's vibrating. Let me open this.

• 53:36Speaker 06

  Oh, wow, she put the newsletters in this plastic envelope, and they're all stapled.

• 53:45Speaker 06

  Oh, wow.

• 53:49Speaker 06

  My heart's beating a little fast. What if I hate it? I'm surprised I'm so nervous. I pour everything out onto my bed and start to read. There's printed text alongside handwritten notes, little illustrations, all kinds of stuff: fragments of other zines, oddball poems, thoughts that friends and readers send in about their experiences of grief. In the March issue, Chelsea draws a thin veil, the kind her mother must be behind. I find this very helpful, to see an image of something I've only felt.

• 54:24Speaker 06

  On a page listing objects that her mother left behind, Chelsea confesses she wears her mom's old powdery blush. WTF, she writes. I know, I respond in my head. WTF, I wear my mom's old mascara. It makes me feel close to her face.

• 54:42Speaker 06

  In the August newsletter, More Recognition, Chelsea writes about how, when her phone rings, she assumes it's someone calling to tell her someone else is dead. I do this, too. Every time a friend or relative calls, I let my phone ring at least three, sometimes four, times, so I can study myself for news. I'll just stare at their name a few seconds too long, trying to prepare.

• 55:08Speaker 06

  I finish all 12 months of newsletters in a matter of hours. When I set the last one down, I'm suddenly angry. Furious, actually, pretty much for the first time since my mom died. Because comparing all those notes with Chelsea and her grieving friends, I completely understood what they understood. I felt exactly what they felt. Which could only mean one thing. My mom must really be dead, too. And I must really be trapped here, for good.

• 55:39Speaker 06

  Chelsea writes about how, years after her mother's death, she still conjures her mom in places she's never been. And I realized, of course, I do that, too. One time, it almost worked. I was walking down this long subway corridor, composing a text to my mom in my head, when I saw this woman walking towards me wearing these really brightly colored overalls, white but patterned all over in psychedelic red, yellow, and green flowers. I was stunned. I had bought my mom the exact same pair just last summer, from a random store in Michigan. Only two on the rack and one in my mom's size. She loved them, made a splash when she wore them to her ladies poker night.

• 56:22Speaker 06

  I was so comforted and overwhelmed by those overalls walking toward me that I cried the whole way to Brooklyn.

• 56:36Speaker 02

  Molly Marcello. She was the production fellow at our show This Spring. Her story was produced by Fia Bennin and Diane Wu. Chelsea Granger, by the way, has made a book based on her zine. It is available on Etsy. It is called "So Many Ways to Draw a Ghost."

• 57:35Speaker 02

  Well, our program was produced today by Lilly Sullivan. People who put our show together today include Ben Calhoun, Michael Comitay, Adrian Lilly, Stone Nelson, Ruthie Petito, Nadia Raymond, Anthony Roman, Ryan Rumory, Ruby Schwartz, Frances Swanson, Christopher Sotola, Julie Whitaker, and Diane Wu. Our managing editor, Sarah Abdurahim. And our senior editors, David Kestenbaum and Nancy Updike. Our executive editor, Emmanuel Barry. Special thanks today to Kate Mann, Diego Estrada, Dr. Mark Burish, Spencer Schultz, Jared Dulcet, Clusterbusters, Joe McKay, Bob Wold, Anna Williams, Larry Shore, Spencer Green, Mike Peterson, Robbie Sandler, Craig Casper, Tom Zeller, author of The Headache, Joy Onuzuka of the American Tinnitus Association, and Bonnie O'Leary of the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons.

• 58:19Speaker 02

  Thanks also to all of our This American Life partners. They are an essential part of funding what you hear right here, every episode. You can become one also. And as thanks, if you do that, you'll get exclusive bonus episodes. You'll listen ad-free, you'll get early access to events and live streams and other stuff, as we think of it. Anyway, sign up at thisamericanlife.org/lifepartners. That link is in the show notes. This American Life is delivered to public radio stations by PRX, the Public Radio Exchange. Thanks, as always, to our program's co-founder, Mr. Torey Malatia. You know, he is slowly, methodically, with difficulty, working his way up the levels in Candy Crush Saga.

• 59:01Speaker 05

  I know that I'm hitting 10 because I'm gasping for air, rocking back and forth and trying to induce a trance, because there's nothing that's gonna stop it.

• 59:12Speaker 02

  I'm Ira Glass. Back next week with more stories of This American Life.

• 59:46Speaker 02

  Next week on the podcast of This American Life. So this guy sits down with a woman, and he asks, "Are you recording this?" Are you recording this? No. The thing is, though, the woman, obviously, is recording, and police are listening in. And she gets this guy to admit what he's done, in detail, things she's wondered for years, in this recording. Here at our radio show, we have never heard anything like this. It's next week on the podcast or on your local public radio station.

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