901: Is Your Blue My Blue?

0:00This message comes from Integrative Therapeutics, makers of Cortisol Manager, named best overall ashwagandha supplement by Vogue. Use code STRESS2026 for 20% off of Cortisol Manager on Amazon.com. A quick warning, there are curse words that are unbeaped in today's episode of the show. If you prefer a beeped version, you can find that at our website, thisamericanlife.org. Okay, 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 brain thing,

0:54which 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. 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. Okay. 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.

1:32But the good news about cataracts is it's a simple surgery. It 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 seemed before. 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.

2:12I had no idea I had cataracts. I had no idea I was missing anything. I mean, it's funny. Six years before the 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 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,

2:51when 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. From WBEZ Chicago, it's This American Life. I'm Ira Glass. Stay with us. Stay tuned for the following announcements and messages from our sponsors.

3:43Support for This American Life comes from Squarespace, the all-in-one platform for creating a fully custom, on-brand website. Choose from a wide range of professionally designed, award-winning templates with options for every use or category. Showcase your offerings with a website designed to grow your business. And manage payments seamlessly with branded invoices and online payments. Visit squarespace.com slash American to get 10% off your first purchase of a website or domain. Support for This American Life and the following message come from Capella University. You know that feeling when there's a spark building inside you, that you were meant for more? That's your own drive pushing you towards what's next.

4:23Capella University gets that. With their FlexPath learning format, you can set the pace and earn your degree without putting life on pause. You've built experience and know what you're capable of. Now, this is your time to turn that momentum into more. The only real question is, what can't you do? Learn more at capella.edu. This is American Life Act 1, 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 that got louder and louder

5:12over 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, 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,'re a kid and adults say stuff like this to you and you think yeah maybe i think that my dad had been telling me it so long but i also didn't fully believe it

5:56um when i first really ingested it was after joining my first like real like garage band he was 14 or 15. It was him and a few friends. From the start, their very first rehearsal together. 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 away and there was just such a joyous feeling of just like the pure like sound of these terrible sounded classic rock covers just filling my body and I can remember after like our first rehearsal uh you know my friend lifted up the garage door and we all went out and laid on his driveway.

6:45And I was just like, man, this is amazing. 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. 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 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.

7:32And he resolved, next rehearsal, I'll be different. So rehearsal day came, 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. And again, after a minute, he took them out. 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. 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.

8:24This 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 and realize that he could not, which was so scary. 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

9:12grave physical injury to myself. But it really felt secret and shameful. 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. 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. And then, when Sean gets into his 20s, when he turns 23, something interesting happens. He brings a second person into this

10:00secret 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 their 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. Still a band today, the Banksons. Anyway, here's Abigail. 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. I think you're snapping your fingers by your ears and kind of looking around, and you'd start snapping in both of your ears.

10:47Maybe snapping your fingers by your ears. 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. I was 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 going to go away, let's use it up in fire. Let's use it up joyfully. And there's something to that. But we were also reckless together. They would play these clubs, and Sean's attitude at the time was, however loud the other musicians had the monitors, they could do.

11:44Whatever anybody else did, he could do. 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-yearplug, 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. 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? No, I definitely wanted to be, like, sexy and interesting. I was like a new wife. Who wants to be that person, like, nagging?

12:41Oh, my God, you know? Like, remember, put in your earplugs, honey. 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 going to handle it. Abigail says that she understood that Sean was going to 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.

13:28It was like having a very unsexy conversation about who would be when we were close to death or something. And it felt like, well, once your years 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. 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 the early 30s,

14:23Sean'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. 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. So basically, as you lose frequencies, each frequency that you lose becomes part of the noise. And that noise, that cicada-like humming, it never goes away. So again, he can't

15:07hear certain frequencies, and those frequencies become part of this permanent humming sound. Okay, so let's hear it. All right, so I'm going to start bringing it in now. Okay, yeah, so I hear the buzzing for sure. 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 it was really starting to be ever-present. 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. That's great. Yeah, my voice is low enough that it's not affecting it too much yet um 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 oh, you're harder to understand.

16:05And then consonants are getting harder to understand. You'll notice that, I think particularly with like, like in son, versus like, uh, like in, uh, Tony or whatever, you know, those, those, those consonants are getting harder. He continues like this, removing frequencies from his own voice, and adding those frequencies to the constant hum that you hear running behind him. So this is about what it sounds like in my head right now. Consonants are getting harder to understand. I mean, you sound like somebody like underwater or something. Yeah. It was such a gradual onset for me that this is just how the world sounds. I literally have no idea what you just said. Say it again more slowly. It came on for me so gradually, my hearing loss, that this is just how the world sounds.

17:01Yeah. I learned on my hearing test that at a normal conversational volume, I can understand about 20% of the conversation. If he 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

17:47is that Sean can not only show Abigail what he's hearing, he can show himself what it's going to be like in the future. Okay, so now we're going to go into the future. You know, let's see here. Decade, 15 years to me. This is 15 years from now for you. Maybe 10 years. It's about when my dad stopped playing music with other people. Sorry, say that again more slowly. We think this is what it sounded like for my dad when he stopped playing music with other people. I'm just going to repeat what he says. Okay, good. Yeah, this is about where my dad's ears were when he stopped being able to play music with other people. I should say that Abigail can do that because she's in the same room as Sean is.

18:38So 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? As we go farther into the future, I think this is about what it sounds like for Dad now. And this is most likely where my ears are heading. I have to say this is so strange. It's almost like it's impossible to hear words, and it just sounds like pulses of noise more than speech. That's right. All of the sonic information you need to understand language is pretty much gone. All right. Let's come back to normal conversation now. Bring it back. Back to the present and there we go. Goodbye, Tinnitus. Wow.

19:51Sean, 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? Um, already and you kind of knew the basic idea of what he was hearing, what was it like to actually hear the demo? It's very stark, just seeing how hard he had to work. I mean, did you have a feeling of like, oh, I knew it was bad, but I didn't realize it was this? Yeah. Yeah, I said, was this? Yeah. Yeah, I did. I mean, it's like there's another huge truth, like another animal in the room with us all the time. Yeah. And he's navigating it often alone.

20:39It's hard. 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. Yeah. But hearing your tinnitus is not a demonstration of tragedy. It's just a sort of stark invitation into your experience. 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, and he would nod along. And then often he would say something thinking that he was understanding the conversation,

21:25and 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 the 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. And then? And then we became parents. 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.

22:04And 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 Louie 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. 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

22:44to 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. 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 help. I really felt like this has to change, and I have to wake up. His son's lungs started working. No transplant was needed. He was fine. But it shook up Sean. 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 go. And so what'd you do as a result?

23:39I started wearing earplugs. I like, that was the first thing is I just 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. Getting really vocal about stuff that we had been that we were scared with. People would think we weren't cool or weren't like down or weren't flexible, like in the music scene, you music scene, that we were hard to work with, because we had these particular needs, special needs. To turn the music down, basically. Yeah, just to turn it down, and really specific work with monitors. It's so funny, because in music, there's so many clichés about,

24:21like, turn it up, crank it up, and there's no cool version of turn it down. They should go from speaker to negative one. That's right. It's like in Spinal Tap instead of 11. That's who we had to turn into. 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 you hear people say.

25:17He'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. And so when I first sat down with Sean and Abigail in the studio, they were like people trapped in quicksand with this decision. 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 no, I haven't. I have not been able to. Oh, my God, Abigail, how are you not so annoyed? Listen. I don't know why I'm crying.

26:09I really love you. I'm really in. However you want to do it, I'm in. You know. That was recorded in March. Abigail had 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 talking with you and feeling like this is really a little ridiculous. And it was that and

27:02that combined with just how genuinely I was struggling. Like we were working with collaborators and I was just not able to hang. Like literally, like it was just hard to communicate. 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. 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. Which I had no idea that you were even on that journey. 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 saying, oh, I just got hearing aids.

27:44And then you reached out to me to be like, who'd you get them from? Did you like them? Yeah, that's what happened. 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. 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. Seanan surrounded this decision with so much denial, so much fear.

28:26And now? My ears aren't restored, but I am hearing things I haven't heard in decades. Like daily life is different. 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, you know, like intimate late-night talks that would have been literally impossible for him before because quiet conversation was the thing that he could not hear. The, like, first night you brought your hearing aids home. Yeah. And then we had this moment where we live in a studio, so our kids were asleep right there,

29:06and we were just trying to talk about the day. In the past, two kids asleep in the same room, they might try to talk. And I just couldn't, you know, and we would have to text, or I would need her to speak too loudly, and a child would wake up. And best circumstances in those days, Sean had so much trouble hearing what Abigail was saying. In all honesty, I'm not like the most patient woman and I will give up. I'm embarrassed to say, but I'll give up if like there's a lot of repetition sometimes. Like it'll be like, oh honey, like you look great. And he won't hear me. And then by the end I'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.

29:47You know, like 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. Does this make you wish you had done this years ago? Yeah, I do. I do wish I had done this years ago. They're both learning ASL, preparing for a future that now both looking at pretty squarely. When you have a lot less hearing, we're going to be great. We're going to be great. You know, we're going to be different. But who wants to write the same song over and over again anyway? John says that one thing that made all this possible was that he said he needed to be able to picture himself with hearing aids,

30:39like 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. All right. Why don't we close this out with one of the Bengtson songs? Lose my beauty, lose my strength, and I've just begun. I'll give away this body by the time I'm done. Salt from the water, an apple from the tree. I'll be so much smaller, will you? Will you come close to me? Sometimes it don't blow hard enough And I am left coated in dust So shake me hard Pull me in the air Through the ringing in these broken ears They're singing If only I could hear it The Banksons, Abigail and Sean. That song's actually from a show that they wrote called Ohio,

31:54where Sean talks about some of all this stuff on stage 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 bensons.com. That's B-E-N-G-S-O-N-S dot com. Oh, the joyful, joyful gods say. 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. Stay tuned for the following announcements and messages from our sponsors.

32:51Support for This American Life comes from Dell. This Black Friday, give a gift that goes beyond the box. The Dell XPS 13 laptop. It's the thinnest, lightest XPS laptop yet, with a long battery life, beautiful design, and powerful performance with Intel Core processors. We'll be right back. slash deals. That's dell.com slash deals. Support for This American Life and the following message come from Easy Cater, the workplace food platform. Easy Cater helps organizations order food from favorite restaurants, meet dietary needs, and stay on budget. With employee meal programs, flexible payment options, and 24-7 customer support all on one platform. Learn more at easycater.com. Support for This American Life and the following message come from Capella University.

33:50You know that feeling when there's a spark building inside you, that you were meant for more? That's your own drive pushing you towards what's next. Capella University gets that. With their FlexPath learning format, you can set the pace and earn your degree without putting life on pause. You've built experience and know what you're capable of. Now, this is your time to turn that momentum into more. The only real question is, what can't you do? Learn more at capella.edu. This is American Life from 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,

34:33and 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 2 of our program. Act 2, 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 Shree's Khanderajah, recently came across this survey that tries to rank physical pain and specifically the pain that people get from cluster headaches. 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.

35:16I 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. 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.

36:10Then 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 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. Well, I mean, there's a very loud report in a closed vehicle, the ear deafening blast. He was sitting in his car, taking apart his gun.

37:04And in the middle of telling a joke to his friend, when? 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. Eric, may I ask? And I know this isn't the point of the story, but what was the joke? You know, 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. 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.

38:00I refused the opiates. I didn't want them. I was already eight years sober at that point in time when I had gotten shot. Oh, wow. So you had an unmedicated gunshot wound. Yeah. They gave me ibuprofen. Okay. And that night, I remember screaming that night for help because it was getting unreal. Eric, on a pain scale, zero, no pain, 10 being the most, how bad did it get with the gunshot? I would say a seven or eight. Okay, seven or eight for a gunshot. His cluster headaches start at seven or eight and get a lot higher. 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 upwards of 10 and I know that I'm hitting 10 because

39:07I'm gasping for air rocking back and forth and trying to induce a trance because there's nothing that's gonna stop it and when I get to 10 when I know they're coming yeah I'll get in my car and I'll go somewhere secluded. I'll get away from everyone because it's traumatizing. 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.

40:06They think it's caused by a dysfunction in the hypothalamus. It's the body's inner clock. And for a lot of people, cluster headaches hit like clockwork. They're eerily precise. The most common time for a headache is 2 a.m. 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. 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. So that's his cluster headache pain. Which pain do you think you can endure for longer? The gunshot, for sure. Eric gets six to seven cluster headaches a day. So, in other words, it'd be about as painful, maybe even a little easier,

41:03for 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 6 versus cluster headaches, which got 9.7. 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 would probably have to put that somewhere between a 7 and 8. Okay. Say 7 and a half. Can I ask you about your cholesterol headaches? Sure. How bad did they get? I'll say I've got a 9.5 or a 9.9, but never a 10. And the only reason I never say I have a 10, because I can

42:06always think that there's the level where it gets worse. 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. 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.

43:01How's that compared to cluster headaches? A co-worker 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. The birth was almost entirely unmedicated. And I felt everything. Absolutely everything. I can see it in your face. Yes. Yeah. I would put labor, active pushing, as a 9.5 out of 10. Is 9.5 the moment of crowning? The tear. I would say the tear itself was 9.5.

44:03Ashley has given birth exactly twice and suffered from cluster headaches hundreds of times. Cluster headaches, a different type of pain. And I would still put cluster headaches as a 10 out of 10. 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. I will say that when you first introduced the comparison to me, I was nine months pregnant with our second child.

45:04Back 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. Seems like something she might want to know about. 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. I don't remember exactly how you compared them to childbirth, like are more painful than childbirth. Oh my God. I guess I shouldn't have said that. 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.

45:56If you had to rank my response to your pain, 10 being empathetic and zero being callous, what ranking would you give me? 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. Closer to zero than 10? I don't know. Say right down the middle. Five. I think we could say five. That's the past or right now? Now? No, I think that you've gotten better. Six? I don't know. Don't make me do this, please. Let's just agree. If you want someone to empathize with you, don't try to compare your pain with theirs.

47:07Especially 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 cholesterol 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 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 are surrounded by the stuff. After a conversation, he gave me a hug and told me, I know your pain. And he did.

48:02It felt like empathy on a molecular level. I don't have anything to compare it to. Aishwarya Khanderaja is one of the producers of our show. Act three, I'm blue, Daba Dee, my mom died. So when we were 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 than 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,

48:54they 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 do you like to cover? My mom is dead. How are you liking New York? 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, 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. My mom died suddenly three months before I started my job, on a Monday in October, a perfectly ordinary day to make an exit.

49:50At her moment of death, I imagine her saying her favorite word, shit. 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. The only time I feel relief 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 co-worker here at the show, Mike Comete. 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

50:46was 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. 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. When Mike told me this story, I said the following out loud. Un-fucking-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.

51:34I 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, okay, that would be great. But mostly I needed to write this wrong. Also, it was nice to have a goal. So I set out to get it back. 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 onto it?

52:26Crickets. We follow up with more emails, social media, LinkedIn, and just like our dead parents, the cat guy gives us no response. 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 going to make a zine. There was no question. It starts off with, like, 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.

53:15And that zine she made, she actually ended up making 12 whole months of newsletters about grief. Where does the, okay, where does the newsletter live now? Like, is it saved on a hard drive? No. I, like, actually, I feel like newsletter live now? 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 thousand-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

53:57steps to my apartment. And the whole thing feels like it's vibrating. Let me open this. Oh wow, she put the newsletters in this plastic envelope and they're all stapled. Oh wow. 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. On a page listing objects that her mother left behind, Chelsea confesses she wears her mom's old powdery blush.

55:02WTF, she writes. I know, I respond in my head. WTF, I wear my 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. 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 steady myself for news. I'll just stare at their name a few seconds too long, trying to prepare. 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.

55:51Because 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. 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.

56:40I 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. I was so comforted and overwhelmed by those overalls walking toward me, that I cried the whole way to Brooklyn. My name is Marcelo. She was the production fellow at our show this spring. Her story was produced by Fia Benen 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. Thank you. Our managing editors, Sara Abdurrahman. Our senior editors, David Kestenbaum and Nancy Updike. Our executive editor, Emanuel Berry.

58:27Special thanks today to Kate Mann, Diego Estrada, Dr. Mark Burrish, Spencer Schultz, Jared Dalsit, Koster Busters, Joe McKay, Bob Wold, Anna Williams, Larry Shore, Spencer Green, Mike Peterson, Robbie Sandler, Craig Casper, Tom Zeller, author of The Headache, Joy Onizuka of the American Tinnitus Association, and Bonnie O'Leary of the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons. 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.

59:10Anyway, sign up at thisamericanlife.org slash 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. Troy Malatia. You know, he is slowly, methodically, with difficulty, working his way up the levels in Candy Crush Saga. 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 going to stop it. I'm Ira Glass. So this guy sits down with a woman and he asks, 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.

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