MARY HARRIS: Hey Amanda.  

AMANDA ARONCZYK: Hello Mary.

MARY:You’re here because you have a story for us.  

AA: That’s right. This is a story about a guy named Jay Alan Zimmerman. 

AA: So you’re there…

JAY: Okay. Hi.

AA: He grew up in a very musical family. And he says his bed was in the room directly above the grand piano. There wasn’t a day in his entire life where he didn’t have music. When he was 19 years old, he moved to New York City to become a star.  

JAY: I wrote my first musical while I was living in the YMCA.

AA: Next thing he knows he’s standing in front of Stephen Sondheim’s publisher. So it’s the early 1990s, it’s before cellphones, and the guy is on the phone and he’s trying to get Jay a gig. And he’s like wrapped in telephone wires, he’s talking on two phones at the same time... 

JAY: And over here, he’d be like making a bet on the horse. And he’d call up blah blah, I’ve got this kid here, he’s from Iowa. He’s a Zimmerman, but he’s a Methodist... you know because that’s like really funny to him.

AA: The publisher cannot believe how innocent and corn fed Jay is. 

JAY: And I’m so young and cocky. I’m like, “Oh, well, I’m going to write these shows, and I’m going to perform in them on Broadway, and I’m going to make movies on the weekends…” (laughs)

 AA: He just wants to do it all and he actually had some potential. But he’s got to be realistic and he has to make money. So he gets a gig, and it’s writing children’s songs. The first assignment is to write some songs about dinosaurs.

AA:  Can you sing a little bit from the Dinosaurs song?

JAY: Dinosaurs!  Oh my god I’ll probably forget my own words! Because you know we used to record all my own demos, and I would do voiceovers and sing like a kid, you know, and then adjust the levels… 

JAY: I like dinosaurs!! Different sizes, big and small! 

Mary: OK, you hear that music, you kinda can’t help laughing, right? 

AA: Yeah! It’s a very sweet song and I’m not just playing it because it’s a good, cute song about dinosaurs. But it was also a turning point in his career.

Mary: What happened?

AA: Well he’s working on the song and he and the engineer are in the studio and they’re kind of laying out all the different parts, and they decide they want to add some sound effects.

JAY: So we wanted to start the track with the sound of these birds. And so the engineer found different bird sounds, whatever, puts them in the track. And I’m like, where are the birds? Turn up the birds! And that’s when I realized uh-oh. Because he’s like, ‘They’re playing.’ 

I’m Mary Harris

And I’m Amanda Aronczyk

MARY: And this is Only Human. For the next few weeks we’ll be looking at how we experience the world with and without sound. Amanda, you’re going to take it from here. So what happened with Jay and the birds?

AMANDA: Well, that was the moment when Jay realized he was losing his hearing. Which, when you’re a composer, is the one thing you desperately need. You’ve probably noticed that Jay’s voice sounds a bit odd. That’s because he hears very little. But when you talk to him it’s hard to tell. 

AA: You seem to be hearing really well.

JAY: Hm?

AA: You seem to be hearing well.

JAY: What?

AA: Most… you seem like you’re hearing well.

JAY: Right, that’s the magic trick.

AA: Uh-huh. 

AA: The magic trick is lip reading. And the minute I put my mouth behind a mic, he can’t do it anymore… and he stops being able to understand what I’m saying.

JAY: If I closed my eyes it’s just – wah wah wah – you know, it’s not intelligible. 

AA: Here’s what Jay can hear: Low tones, like base. The rumble of a subway passing by. But he can’t hear birds, or flutes or violins. And when he stopped hearing his wife talking to him, that is when the doctors told him he was considered “deaf”. 

JAY: And that was really a shocking discovery to me, you know. I’m told I’m deaf, and I’m like – oh! Ah! Can I curse on this program? (laughs)

AA: Sure you can curse a little bit.

JAY: I’m trying to come up with a nice f-word. I was… frustrated. To think, well what you know — oh I can’t hear anything. Because I’m… deaf. 

AA: “Deaf” was not a label he was comfortable with. And he stayed in denial for a long time. I think sometimes when your body fails you just a little, it’s easy to ignore. And for many years his hearing loss wasn’t that bad: he could still hear the whole piano. 

But then what was in a slow decline, fell off a cliff. He thinks it happened on one day in particular. He was living in lower Manhattan then; just a few blocks from the World Trade Center. 

The building is falling right now, people are running through the street… 

AA: When the buildings collapsed he was at home. And the windows shattered all along his block. But in his apartment, the glass withstood the impact. His windows swung in, and it created a huge amount of air pressure. So he thinks maybe that’s what caused it. The air was also thick with particles of mercury and lead. So maybe that’s what caused it. And then there was also the sound of the impact itself. Maybe that’s what caused it. 

JAY: I have my different beliefs of what I think caused it, but I can never be 100% sure. 

AA: A lot more was lost on that day than one man’s hearing. But for Jay it was a particularly bleak time. He and his wife lost their apartment. They had to leave New York for a few years. Jay says he felt like he was just losing everything… 

JAY: … And all of a sudden it’s you know, my wife is like you’re not reacting when I’m talking to you… 

AA: And this problem that he had been in denial about for years… 

JAY: It becomes more and more noticeable… And then at the same time trying to hide it because I’m a composer. 

AA: Composers, of course with a notable exception or two, are not deaf. Jay figured his career was over. He went back to school. He tried other careers. He tried to be other, different, deaf-er versions of himself. 

JAY: I just found that I’m not happy, not creating music. Well, and I say music, I mean musical theater, I mean the whole thing. I tried to get away from it and I just couldn’t. 

AA: This is when Jay made a decision I don’t understand at all. This whole time while the sounds of the world were slowly disappearing for him... He could have actually gotten his hearing back. He could have gotten a device called a cochlear implant. 

AA: I mean did you consider that?

JAY: Oh, oh yeah. 

AA: This implant bypasses whatever is wrong in your ear, and sends an electrical signal to your brain. The brain then thinks it’s hearing sound. Jay is a perfect candidate. But he has refused to get one. 

JAY: The friends I know who have cochlear implants are kind of frustrated with me because I have been on the fence for like forever now. It’s just so long. And they say, “you should get it, get a cochlear implant.” But I’m this unique little snowflake over here (laughs). And right now those things can’t really help me do what I want to do with my life.

AA: Which is make music.

JAY: Yeah. (Sigh) 

AA: Jay composed this song. But he can’t hear it. And he doesn’t think a cochlear implant would help. It’s hard to simulate exactly what music sounds through one, but his song… would probably sound more like this.  

(SIMULATION)

JAY: I think your listeners have to realize that any treatment for hearing loss is not remotely like getting glasses for your eyes. It’s not regular hearing again. It’s an altered reality. 

AA: There’s another problem with an implant: it’s surgery. And it would probably destroy that little bit Jay still hears. So if something new were invented, that would allow him to hear music again, he probably couldn’t get it.  

JAY: If, if I lost the last bit here... I mean I’m clinging on... you have to understand, the - how small the piece is that I’m clinging onto here. It’s below 250 Hz amplified. 

AA: Again, that’s just the low end, the rumble. So to be clear: over the last 15 years Jay gave up feeling safe on the streets, he gave up understanding what was happening at a dinner party, he gave up hearing the voice of his friends, his wife, and his son. And he did all of that because he had heard there might be... a cure. 

AA: A long time ago in an interview, you said you were waiting for a cure.

JAY: Yeah.

AA: Are you still waiting for that?

JAY: I am still waiting. And I don’t know if it’ll happen in my lifetime. I hope so. 

AA: Now I’m going to stop Jay’s story for one second here. And I need to explain to you more about this “cure.” The best way to do that is to take you to a farm. 

KENNON KAY: Here we have our five goats…  

AA: The farmer’s name is Kennon Kay and she’s responsible for these animals at Queens Farm…  So as we walk down the road, she starts to point out all the different pens to me.

KENNON: …And we’re about to come up on our two new additions to the farm, our piglets.  

AA: Because it’s a working farm, these piglets have bacon names. 

KENNON: Francis and Kevin.

AA: Oh come on, Francis and Kevin! Look at them! 

AA: But I’m here - for the chickens. We walk into one of the coops. And Kennon picks up this very pretty speckled hen. And it turns out that these chickens are hiding a little secret on their heads, behind a little feathered flap. 

AA: So when you open that, that is the inner ear?

KENNON: Yeah.

AA: Woah. 

AA: Now in people, that inner ear is hidden deep down the ear canal. You can’t get to it. But in chickens, it’s right there. 

KENNON: Yeah, they’ve got little teeny, teeny little opening, a little fold. 

AA: Because their ears are so easy to get to, chickens make for very good research animals. Now. This brings us to one of the biggest discoveries in this field of hearing research. Ever. And this guy – 

AA: Do you prefer professor or doctor?

ED RUBEL: I prefer Ed.

AA: Ed. I can’t be like “my friend, Ed,” it doesn’t work like that!

ED RUBEL: Okay (Laughs) 

 

AA: Back in 1985, Professor Ed Rubel was working with chickens… chicks to be more precise. And he made a really important discovery; the way many discoveries happen – it was completely by accident. He was working with a drug that is known to cause hearing loss. And he’s putting it into the ears of chicks, so they’d go deaf. Which is kind of awful, but that’s science. 

Rubel was trying to figure how long it took to deafen the chicks… So they put the drug in, and then check on Day 2. Day 4. On Day 8 they could clearly see lots of dead hair cells in the chicks’ ears: These hair cells let you hear, and without them, the chicks must have been deaf. Then comes Day 22. On that day they saw something really weird. At first they thought they must have made a mistake. Because on Day 22, those dead hair cells – were alive again. 

RUBEL: They had more. They were supposed to have less, but they had more! 

AA: Those chicks that were deaf? They could hear again! No one had ever seen this kind of regeneration before. Everybody knew what the implications were: if chickens could do it, maybe we could too. It is a huge deal — a colleague of Professor Rubel’s flies in from France because he has to see it with his own eyes. Pharmaceutical companies line up to start their own research. A “cure” for deafness was so close Rubel could practically… hear it.  

AA: Back then did it seem like it would be just a few years away?

RUBEL: Yeah. (laughs) Yeah. 

AA: So think about the parts of you that do grow back: your skin grows back. Your liver. But we can’t grow a new limb or a third set of teeth. And once we lose our hearing, it does not come back. Dr Rubel says that some cells are built to die. 

RUBEL: It is a huge challenge to change the fate of those cells. 

AA: And that is what researchers are now trying to do. 

RUBEL: We’re trying to change that fate. That’s what we do in biology.  

MARY: I’m Mary Harris. Amanda Aronczyk will be back in a minute. And we’ll find out: Will those chickens help Jay hear music again?

This is Only Human.  

--

MARY: Hey everyone. Like I mentioned earlier, this episode is one of a few that we’re doing this month about how we hear the world. And we want you to be a part of it.

In a couple weeks, we’re going launch a project called Listen Up! — a little bootcamp to help us all become better listeners. Why? Has anyone ever complained to you that you’re not listening to them? Yeah, me too.

So to start this all off, first we’re going to find out out how well we hear. Hearing loss affects more people than you think. More than 20% of us in this country. But most of us don’t get tested. We want to change that. And we’re going to make it easy for you. 

We’ve partnered with an iPhone app called Mimi that lets you test your hearing right from your phone. In just a few minutes you can find out how well each one of your ears work. And you might be surprised at the result. I was.

Go to our website at onlyhuman.org to get the app and find out how to use it. Take the Mimi test, and then share your results with us. Are you relieved or maybe a little worried? Did you learn something new?

Once you know how well you hear, then we can start to tackle listening. To keep up with our Listen Up! project for the month, be sure to subscribe to the show. We’re on iTunes, Stitcher, or wherever you get your podcasts.

--

MARY: This is Only Human. And Amanda, you’ve been telling the story of Jay Alan Zimmerman, a composer who lost his hearing. When we left off, you were talking about a study that really shook the world of hearing research... 

AA: Right, so when it was discovered that chicks could regenerate the ability to hear, people started looking for a cure. This is what Jay had been waiting for for over a decade. Remember what he said? 

JAY: I am still waiting. And I don’t know if it’ll happen in my lifetime. I hope so. 

AA: So that same day when Jay said that to me, he left the studio and went to a meeting for people with hearing loss. And one of the presenters was Dr Lawrence Lustig, he’s a researcher and doctor from Columbia University. Dr Lustig gets up and he addresses the crowd, and says that after many years of experimenting, regeneration may be finally possible. Remember the chickens? This is a descendent of that work. And this is what Jay has been waiting for, for all these years… 

JAY: It’s like “What the, oh my gosh. Is this possible for me?” 

AA: So the next thing he does is he calls up Dr Lustig, and he sets up an appointment. He wants to see if he could be a candidate for the clinical trial. I asked if I could go with him, and he said no, he felt like it was private and I think he was really nervous. So instead I gave him a tape recorder… 

JAY DIARY: I guess this is working? 

AA: And I asked him to record…. 

JAY DIARY: The light is blinking

AA: And he recorded everything… 

JAY DIARY: I’m on high alert because you know, I don’t hear the cars coming, I don’t see the people behind me, I don’t hear them racing or the kids on the bikes or anything like that. So I’m always on high alert making sure I don’t get run over. I’m going to run through this light… don’t hit me! 

AA: Listening to this tape made me understand a bit of what Jay goes through. As if New York wasn’t hard enough already — try doing it while deaf.

JAY DIARY: Hello? Is this the check in? In here. 

AA: And the people he deals with — they have no clue. 

JAY DIARY: Hi, I’m Jay Zimmerman, I have an appointment for 3 o’clock.

RECEPTIONIST: Okay, just have a…

JAY DIARY: I’m deaf I have to lip read you.

RECEPTIONIST: Just have a seat outside. We’ll be right with you.

JAY DIARY: Okay, I’m in the right place though, right?

RECEPTIONIST: Right.

JAY DIARY: Because I got totally lost.

AA: He gets called in, does the exam, and then not long after, he’s back out in the waiting area.

JAY DIARY: I’m back in the hall now. Just finished my audiogram. Not good. Not fun. Sorry I’m talking to myself here. Is that okay?

LADY: It’s okay.

AA: He sits down beside an 87-year old woman who is having issues with dizziness. And they’re waiting. And then finally the audiologist comes back with his results, and Jay realizes he’s hearing even less than before.

JAY DIARY: This is really, this is scary. Look at that. There’s nothing. Nothing. Nothing. Nothing all the way down. Ah well. Okay. Well, that’s why I’m here. Maybe they have a cure. Wouldn’t that be amazing? Wouldn’t that be nice?

LADY: (Laughs) nice.

JAY DIARY: Bye. Bye.

AA: So he leaves the appointment and he heads back home, and he turns the tape recorder on one more time. And he’s starting to have some doubts. 

JAY DIARY: So I’m back home, I’m in my office. I don’t know what I was expecting to feel today, whatever it was I don’t think it was this. (Sigh) (laughs) So the test we did today, this was the first time I got zero, so in some respects that’s good news because it can’t get any worse! But I guess, I was hoping I was hearing better. And then I meet Dr. Lustig and he was very nice, very friendly. And I think he would love to launch into the next step, I’m sure that’s what he wants. And I have a tendency to try to do what I think other people want, but I have to decide what I want, in this case. In this case, the world would prefer I was hearing I think, it would make it easier on everybody around me. I don’t know how to process that. Because I’ve always wanted my hearing back, primarily so I could enjoy music, which I guess makes me selfish, rather than thinking about all the people in my life. But the sounds of flutes and piccolos and birds and tiny little triangles… they were so gorgeous. That’s it for today, bye bye.

AA: I haven’t really said much about Jay’s music. Slowly over the past decade, he’s figured out how to compose. He says it’s part memory, part imagination: He remembers what a bassoon sounds like, and he dreams that sound into a song. And that little bit of hearing he has left helps, too. Lately he’s been working on a show called, “Roboticus.” It’s about a small guy who hates his body and dreams of being bigger, better, perfect. He meets a brilliant doctor who promises to fix him. Does this sound at all familiar?

The doctor is very convincing and the next thing the guy knows he has a robotic arm. And then stronger, longer legs. A powerful chest. On and on he goes, casting aside his old body parts for these shiny new ones. Even his head. He is becoming Roboticus. But then, he wakes up back in his own fragile body. He’s weaker than he was before. And at first, he’s horrified. He slays his huge robot self. And he faces his own imperfections. And finally, accepts his own body.

It’s not about Jay. But of course, It’s all about Jay.

MARY: But hold it, Amanda, what happened with Jay? 

AA: Well, he was really not sure what he wanted to do about the trial. So we waited a few months, and then I said, “Jay, why don’t you come back into the studio and tell me what you’ve decided.” 

MARY: What did he say?

AA: Let me play you the tape.

JAY: What I decided about hearing regeneration, is that I’m going to do it…  in the future (laughs) I almost got you!!

MARY: He’s stalling! 

AA: Yeah, I guess he’s stalling. I guess he knew that I really wanted him to do the trial.

MARY: Yeah

AA: I mean I really wanted him to do the trial because I wanted it to work for him. I wanted him to have back the thing he had been missing, so I was very much hoping he would do the trial, and that he would wake up with a little bit more hearing, and then over time maybe a little bit more hearing. And that it would make him really happy.

MARY: Why do you think he decided not to do it? 

AA: It’s not that he’s not going to it. It’s that the trial was in such early stages, it just didn’t seem likely that it was going to work. So he is going to wait.

AA: I’m sorry that you didn’t get to take the drug and all of sudden wake up and have hearing again. 

JAY: I’m not sorry. I mean… now I have adapted. I am in one of my best phases of life right now, even with profound deafness. I’m developing my shows, I’ve got robots that are going to come… you know, I’m very, very excited about my life right now. And I feel great about my career. Finally! I mean I’ve had so many sucky years. I want to really embrace this time that feels good. 

MARY: I just love that he’s found a way to adapt. 

AA: Yeah, and he’s finally made it. But he made it as a deaf composer. So the fact that he became deaf ended up being an incredibly good thing for his career. He performs at all these hearing loss events, he’s picked up some sign language, and he feels like he’s a part of this community that adores him. And so this thing that Jay had seen as his deficit, had actually turned into something he finds very, very beautiful. And he’s really happy.  

MARY: That was Amanda Aronczyk. Listening to Jay’s story, it’s pretty incredible how the idea of a cure can lose it’s appeal — even when we’ve lost something we never thought we could live without. Next week’s story is about a whole community of people who aren’t interested in treatments or fixes.  

Last week, we aired an interview with Max Ritvo, who is 24 and has late-stage cancer.  A lot of you were really moved by him. Giles wrote from Italy to say: 

“I secretly wept and laughed while listening.”

And Asha from Houston, Texas wrote in:

“Well young man, you are certainly "ONLY HUMAN"... in its full exalted glory, nobility, and vulnerability. Thanks for sharing your sweet, raw, luminous spirit with all of us.”

Thank you for writing. We’re passing all of your notes on to Max.  

If you’d like to tell us what you think about this show or any of our earlier episodes, get in touch.  You can find us at onlyhuman.org. And while you’re there: find out how old your ears are. Take the Mimi hearing test.   

Only Human is a production of WNYC Studios.  This episode was edited by Molly Messick. Our team includes Elaine Chen, Paige Cowett, Fred Mogul, and Kathryn Tam. Our technical director is Michael Raphael. Our executive producer is Leital Molad. 

Special thanks to WNYC’s Beth Fertig. She’s the reporter you heard who was near the World Trade Center on nine eleven. Thanks also to Andy Lanset, Winn Periyasamy, and Lena Walker. Jim Schachter is the Vice President for news at WNYC.  

And I’m Mary Harris. Back at you soon.