MIGUEL LLAPA: I will have to figure this out for myself and - either if I hurt myself, I don't hurt myself. It's up to me to really figure out cause I'm at, I feel like I'm at the age where I just, I want to explore things, you know, just check out how far I can really go, you know?

This is Death, Sex & Money.

The show from WNYC about the things we think about a lot…   

and need to talk about more.

I’m Anna Sale.

Miguel Llapa is 18, and just finished his senior year at Frank Sinatra School of the Arts, a public high school in Queens, New York. 

But Miguel wasn’t in that building much in the last year because of the pandemic. He’s spent most of his time in his bedroom in Harlem, where I reached him over Zoom.

ML: Behind me I have my drum set, and my snare drum, along with my practice pad, then some timbales over to my left with my, uh, dirty clothes. 

AS: [Laughs]

ML: Oh! And then my marimba is downstairs.

Miguel is a percussionist and the marimba is his favorite. This is him playing at a recent recital. He says he loves the warm sound. 

[MUSIC -- Miguel's marimba solo]

The marimba is a 6 and a half foot wide instrument—kind of like a giant xylophone with resonator pipes underneath—that he plays with four mallets.

ML: Physically speaking, I'm pretty small. Um, but when I'm on, when I'm on a set, when I'm on an instrument, it doesn't really feel that way. I feel grander. I feel more myself when I'm playing it. I don't feel like the little guy anymore.

ANNA SALE: It lets you fill up a lot of space.

ML: Yeah, and I can take up a lot of space.

Miguel was born with a set of health issues that affect his lung capacity, and ability to breathe.

ML: I was born with what we call congenital scoliosis. It's just being born with, um, an abnormality in the spine. So I was born with multiple curvatures as well as missing eight ribs on my right side. Um, as well as a pectus excavatum, which is a pit in the chest. I was born with 52 percent lung capacity. So I’ve never known how it feels to have 100 percent. Now I’m at 25 percent. 

AS: Do you feel like your - is your condition something that's visible to someone who's meeting you?

ML: No. It's not visible. I just look like a really short Hispanic kid. I hear all the short jokes, you know, especially being in a Latin family. Yeah, you're going to hear it. So yeah, it’s not visible to the naked eye.

AS: Are there movements that are more difficult for you than others?

ML: Um, I guess so. Like, it's hard for me to bend over at times. I can't fully bend over because of like, my spine is so rigid. At school, I have what we call a para-professional, like a personal aid to help me out with my books and stuff, because I can’t carry such heavy loads. She helps me out and do that. Uh, I love my para, she’s amazing. Shoutout to her cause she’s helped me through a lot too. I just never liked feeling dependent. It’s more like I wanted to prove to myself I can do it. I know I need it. The fact that I know I need it hurts. I don't like the fact that I need it because of the way I am.

Miguel has always felt this tension, between accepting the help he needs and craving independence—but it has ratcheting up as he thinks about leaving for school at Ithaca College in New York, several hours away from home. 

He says he’s ready for more space from his family: his two little brothers, who are 3 and 11, his dad, who works two jobs as a super in apartment buildings, and his mom, who’s managed his care his entire life.

ML: I love my family, you know? I love their support through everything, but I reached a, reached in like a point in my life where I'm like, really kind of just want to test the waters on my own without having any like influences around me I guess. And how to, how to do that on my own. My dad's very, very like that. He's always - he's always let me test the water first, you know? And then when I go and ask for help he's always there.

AS: How did you come to appreciate that—like have there been instances where you felt like people weren’t letting you do that?

ML: Well to be honest I started appreciating it more recently, you know, because as I got older, I started to feel like more dependent when I wanted to be more independent. Because I have what I have with, um, my condition and everything. I just felt like, because I was, I was always in and out of the hospital, you know, I, I always had someone with me. I always had someone accompany me, which I love. I appreciate my mom was with me through thick and thin. She was there every appointment, every surgery. And I can never thank her enough for that. But after some time, you know, I started to grow, to feel like I wanted to test things out on my own. 'Cause I, I always felt someone was with me.

AS: Are there birds in the background?

ML: Oh, yeah. I'm sorry.

AS: That's okay!

ML: Those are, those are my brother's birds. They’re so loud.

AS: What kind of birds? 

ML: Uh they're parakeets.

AS: I feel like I want to hang out in your house, Miguel. There's a lot going on. A marimba in the living room, parakeets... [Laughs]

ML: There's there's always a lot going on, which is why I'm really eager to go to college.

AS: I'm curious, Miguel, do you have a sense - do you think your parents are ready for you to go away to school?

ML: My dad, yes. My mom, I'm don’t know. I’m not so sure. Because she's been with me through everything. She seen me at my worst. But she's more, she worries for me, you know, that's just because she loves me.

RAQUEL CEPEDA-LLAPA: I guess my, my worry is pushing himself to the point that he would hurt himself, like in, in trying to figure things out. Um, and, then me not being close by in case that does happen. How do I help them through? 

This is Raquel Cepeda-Llapa, Miguel’s mom. Doctors told her when Miguel was born that he probably wouldn’t live past age two. She remembers a particularly hard year, when Miguel was 10, in 4th grade.

RC: I said, something's not right with him. He's, he's, you know, struggling academically, he's struggling to keep up both physically, he's complaining of shortness of breath. And that was the first time that a surgeon kind of put something in, in front of me. He put like all his x-rays in front of me, and I saw the progression of how bad his spine got and how much it was impacting his lungs.

And for me, that was just so overwhelming because I'd never knew all of this was happening throughout the years. And I guess that kind of really, yeah, it really, it really, I was really devastated because of how did I not know this? You know, I was trying to do all the right things. I thought I understood. And even at that time, I remember in fourth grade, he said - there was one night that he said, he goes, "I'm tired." But you're so brave, you know, you just have to, you know keep going. He goes, "No, mom, I'm really tired. I'm tired of being brave. I'm tired. I just want the angels to take me because I'm just, I can't do this anymore." [Crying] That was really tough. And I don't want to be, I don't want to get to that place, ever. 

ML: I-I totally forgot about that until she said it. 

AS: Do you remember it since she said it?

ML: It was an afternoon.  

RC: You were in your bed. No. In my bed.

ML: No, in your bed.

ML: I went to cry in your room.

RC: I was trying to keep it together, but as soon as I left and I closed the door—ugh.

Coming up, Miguel explains why he’s ready to advocate for himself and take care of his body. While admitting it doesn’t always come that easily for him.  

AS: Do you delay asking for help sometimes when you need help?

ML: Yes, definitely. Um, I tend to keep a lot of that to myself because I don't like to, I guess, internally I feel vulnerable when I do, and I don't really like feeling that way. No one does. Right? 'Cause I, I felt like I had been a lot of my life and I don't want to be anymore. 

[Knock on door]

ML: Oh, I'm sorry. I think that's my little brother right now.

AS: Oh, the three-year-old?

ML: I think so. Give me one minute.

AS: (Laughs)

--

If you listened to our Game Changer series last fall about how the pandemic was affecting the lives and livelihoods of athletes, you heard my conversation with BMX freestyle rider Chelsea Wolfe. I have some exciting news to share. Chelsea recently found out that she is headed to the Olympics. “I’ve qualified to represent the United States as the alternate rider,” Chelsea wrote on Instagram.

Chelsea is making history because she’s the first ever openly trans athlete to go to the Olympics with Team USA. We talked about what that would mean to her, and to other trans athletes, in our conversation last year. 

CW: It would have helped me a lot if I could have seen somebody doing what I'm doing now to show me that I can be a trans woman and an athlete, I can ride BMX Freestyle and be trans. The two don't have to be mutually exclusive, and I don't have to feel ashamed for who I am, or like I won't have a place in this world.

If you missed our Game Changer series last September—which also featured a professional baseball player considering quitting the game, and an NFL player with asthma who still decided to play despite the COVID risk—we’ve linked to that series in our show notes. 

And, we’re taking the week off next week, so I want to pass along another listening recommendation to you all, for the podcast Aria Code. Our colleagues at New York Public Radio’s classical music station make it, and even if you aren’t an opera fan… or even a classical music person… it’s worth listening to, because the stories they tell are so interesting. Stick around at the end of this episode to hear a little bit of one of the most recent Aria Code episodes which ties together a Stravinsky aria and the story of Johnny Cash’s first marriage. 

--

This is Death, Sex and Money from WNYC. I'm Anna Sale.

Miguel Llapa has had more than 25 surgeries in his life. They started when he was just a baby, and continued through middle school. And that’s meant missing a lot of classroom time over the years. But he hasn’t needed a surgery since he was 14.  

ML: I can actually feel like a normal kid for once. 'Cause it's always interfered with my school. I never had a full year of school until recently, you know, these past two, three years, whatever. It definitely did take a huge weight off my back.

AS: And what do you mean by that?

ML: Because I thought I would be, um, I’d be waiting for my next surgery and my next appointment, you know, all of that plays into my head. I've been just so done with all of it. I mean, I wasn't supposed to live until two. Um, and I'm 18, you know, so all of this stuff I didn't expect to have. When I started playing percussion, I didn't really have like a group of friends to really like talk about music with. Now I'm able to rant to friends and we can just talk days about music. I have that group of people, you know, and a community that is open, open to, to me - who I am, how I am, and very accepting of what I've become.

AS: What do you rant about with your friends?

ML: Oh. Um, we could literally - we would be like, arguing about each other's playlists. Like, "No, your playlist is trash." "Oh, oh no, this song is better." "Wait - did you hear the sound in this song?" Like, geeky music stuff.  

He shared some of his playlists with me—and I can confirm—they are not trash. One song he particularly likes is this one, "It Runs Through Me," by Tom Misch, with De La Soul.

[MUSIC: "It Runs Through Me" - Tom Misch]  

ML: It's like a cool bossanova groove. It starts very low-key with that nice, kind of like passions and nice voyage by yourself. It's pretty cool.

AS: When you picture what it's going to be like to be a college student and what might be different socially. Like, are there, are there things that you picture that you're like, that will be interesting and different and new? Like - 

ML: Yeah.

AS: What are they?

ML: Like, like, Ithaca is a very, um, it's got a lot of cool nature stuff. So, um, I'm excited for that, like meeting new friends, being able to go on like cool, cool hikes or whatever, meeting new people. I'm excited to get into the studios. Like I'm actually really, really, really excited for that. I heard Ithaca had a cool party scene, so that might be interesting. 

RC: [Snorts and laughs] Sorry. 

AS: Party scene? Like I'm picturing like red plastic cups and like a keg. Is that what you're picturing? 

ML: Maybe. Maybe it's like the movies, I don't know, but I'm excited to find out, you know? 

RC: I got teased for that the other day.

ML: Really?

RC: When we went to Ithaca, here I am I'm being asked, you know, how do you feel about him going to college? And, you know, especially now that you haven't gone to see it? I was like, oh no, we went to see it. I wanted him to feel what it was like. I heard that it was on a hill and I just, I needed to know that he was going to physically feel okay to kind of just move around. I just don't know what to expect. And so this couple kind of started laughing, look at each other, started laughing so hard. They were like, you worry about the hill? Are you really worried about the hill? How about all the conversations that you're going to have to have with him about the party, if there's a drinking, if there's a, this, and I'm like, and I'm like, ah.

[Laughter]

AS: You've been thinking about the hill. It hadn’t occurred to you all the other trouble he might get in?   

ML: I was trying to avoid that just now.

RC: I'm like, please, I don't, I can't handle anymore right now. He's like, well, "It's coming. Whether you like it or ready or not!"

AS: When you notice yourself worrying about him and wondering if he's pushing himself beyond, what is, um, what you would prefer he do physically? Where do you put that worry?

RC: [Cries] Sorry. 

AS: That's okay. That's okay.

RC: It's hard. It's hard to, I mean, I try to stay strong and not show him, but. Yeah. I mean, at least here, I can see him. I know, without him telling me I can see. And I can kind of help in my own indirect way, I guess. Um, but just especially this year, I guess it's even harder because our relationship has kind of changed this year. You know, I used to hear like parents kind of, you know, "Oh, they're going through their teens and you know, it's to be expected that, you know, a little rebellious side of them," and I've never really had that with him. I almost was like, you know, okay. I guess I felt a little lucky or fortunate that, you know, we had not hit that, that point, I guess.

ML: Until now.

RC: And we've always been open and, you know, even when we had our disagreements, we talk it out and, but there was that communication. I'm sorry, but I guess this year, um, I don't know. I feel like he's, he wants to protect me. You know?

ML: It's just not a good cycle, you know, after some time. Yeah. I personally feel like I, I do need some time away for myself.

AS: And what I heard you saying Raquel was even when Miguel, like, doesn't want you to be protective, when he's in your house, you can still monitor how he's doing and you don't need to just trust what he is willing to tell you - is that - ?

RC: Like, he doesn't have to, he doesn't have to, I can see it. Like, even if, I mean even a meal, like he doesn't like for me to put it out there, but even just a meal, he can just be frustrated with just not being able to to finish a meal, being hungry, feeling short of breath and in pain, needing to have a pillow underneath his arm because he's in pain. He doesn't have to tell me that, but I can see it and I can kind of tell like, all right, he needs his space, his moment.

ML: And I guess that’s my dilemma. It's like, I got to learn how to get back on my own feet in my own way, without having, you know, maybe mom would be around to help me out.

RC: Like I don't want you to feel like you have to do this on -

ML: No, I want to do it on my own.

RC: Yes, you do it on your own, but this is going to be the first time. I've, I've had to fight with your doctors, your surgeons, to get you the proper care that you need. Sometimes I've had to kind of remind you, like, did you forget this, what this was like? 

ML: And sometimes I'm kind of fed up with that too. I'm like, mom come on. 

RC: Yeah, you don't wanna hear it! [Laughs]

ML: Yeah. I don't want to hear it. Sometimes I have to, as the stubborn teenager that I am, but I just, I really don't want to.

AS: When you get to school, will you have any kind of assistance, like an aide who helps you with any tasks?

ML: No, no.

AS: You'll be all on your own.

ML: Yeah, I'm trying to steer as much away from that as possible actually.

AS: You don't want any assistance.

ML: Me personally, I don't. I think you can see mom kinda like holding back a little bit.

RC: [Laughs] I mean, I, I know that's one of the things like in high school, he was kind of like, you know, I don't think he really ever voiced it as, I don't want a para with me. He was kinda just like, all right. You know? Kind of -

ML: Going along with it.

RC: Yeah, going along with it. Um, maybe not feeling too crazy about the experience of trying to be more social and have friends and then have someone to kind of, you know, follow you around.

ML: It just kind of felt like having a second mom follow me in school. Um, and I didn't like that.

RC: I'm sorry.

ML: No, no, I don't mean to say that to be mean. I'm saying like in college it's a different, it's a different ball game. I don't want, I don't want another mom to be helping me out with the ballgame.

AS: I want to not just focus on the conflict that you all have had over the last year. I wonder, Raquel, like when you - when you think about Miguel finishing high school and where he is at this point in life, like, what have you been thinking about as far as this milestone that he is achieving?

RC: Goodness. I mean, I'm really proud of him. He's um, ugh gosh. [Crying] And maybe through some of this bickering, I don't tell you, but I am really proud of you for everything that you accomplished, all your goals that you have set forth for you. I want to see those things happen for you.

AS: One of the things that I loved hearing Miguel explain to me was about what it feels like when he's playing the marimba. This big instrument. I wonder Raquel, what's it like for you when you watch him play music?

ML: She's always hearing me, um, practicing and my mess ups. So like she usually tends to hear all my drills and routines. So it's not necessarily music. It's just like noise.

RC: Well, that's now. But when I didn't even know, I mean, he had mentioned the marimba to me when he was in high school, that there was a teacher, um, that was teaching him this. And it wasn't until you had like your, the audition, I was outside the room in tears. [Laughs] 'Cause it was just so moving. It was so beautiful to hear him and just to see him just play.

AS: Do you know what you played? What was it?

ML: Uh, I played, what was it? It was called "Rain Dance" by Alice Gomez. It's like one of the first four mallet solos you learn on marimba.

RC: I was like, wow. Um, yeah, I was really, really touched. It was really beautiful to hear you.

That’s Raquel Cepeda-Llapa and her son Miguel Llapa, and again, this song is "Rain Dance" by Alice Gomez, performed here by Garrett Arney.  

Before Miguel goes to college in the fall, he is heading to a summer music camp at the renowned Interlochen Center for the Arts in Michigan. It’ll be one of the only times that he’s been on a plane for something that is not a doctor’s appointment, and he’ll be going alone.

Death, Sex & Money is a listener-supported production of WNYC Studios in New York. This episode was produced by Yasmeen Khan. The rest of our team includes Katie Bishop, Afi Yellow-Duke, Emily Botein, and Andrew Dunn. Our interns are Mardy Harding and Kristie Song.

Thanks to Jaclyn Okin-Barney for her help on this episode. 

The Reverend John Delore and Steve Lewis wrote our theme music.

I'm on Instagram @annasalepics, P-I-C-S, and the show is @deathsexmoney on Twitter, Facebook and Instagram. 

Thank you to Therese Okraku in Seattle, Washington, who is a sustaining member of Death, Sex & Money. Join Therese and support what we do here by going to deathsexmoney.org/donate. Really, if this show, and community have been helpful to you, please become a sustaining member of Death, Sex & Money as we end our fiscal year at the end of June. You can do that at deathsexmoney.org/donate, or by texting “DSM” to 70101. 

AS: It’s interesting to me that you have some instruments that you can play in private, and then the one that you most like to play, you have to play where people can in your family can watch you.

ML: Yeah, it's funny. 'Cause I have a three-year-old, like pulling on my, shirt, "Miguel, Miguel come play with me." Or in the middle of practice, he's like, "Miguel, are you practicing?" You know, he does a lot of that stuff.

I'm Anna Sale, and this is Death, Sex & Money from WNYC.

And now… I want to share an excerpt from the podcast Aria Code with you. Aria Code is made by our colleagues at New York Public Radio’s classical music station WQXR, and it’s hosted by the incredible musician Rhiannon Giddens. And here’s the thing about this podcast… and opera in general... it’s FULL of Death, Sex & Money. 

The excerpt I’m about to share with you is from their deep dive on the aria “No Word from Tom,” from the opera The Rake’s Progress by Igor Stravinsky. The opera tells the story of Tom Rakewell, a young man who unexpectedly inherits a lot of money and goes off to London to claim it, abandoning the woman who loves him, Anne Trulove. And in this episode, we hear how a similar story played out in the real-life marriage of Johnny Cash and his first wife, Vivian Liberto. Here, you’ll hear from Michael Bragg at the San Francisco Opera, museum curator Jo Tinworth, soprano Dawn Upshaw, and Johnny Cash and Vivian Liberto’s youngest daughter, Tara Cash. 

CASH: My father went to -- he was touring in Mexico and he somehow got a hold of a lot of pills. And he came back and flew into El Paso with a guitar case filled with amphetamines and barbiturates. And they were onto him. They knew he was coming through with drugs and they arrested him, took him to jail. And that was a very, very devastating time for my mother, this devout Catholic. She ended up going to El Paso and going to court with him and she didn't really understand addiction. It was just incredibly painful to her. It was a dark time. 

TINWORTH: Scene Four is called “The Arrest,” and you have Tom on the left-hand side coming out of a sedan chair, and what he's actually doing is hiding from the bailiffs. He's in debt. His fine clothes mean nothing anymore. He's run through all that money already. He's about to be taken away and put into prison, and out comes Sarah Young -- Anne Trulove. She's become a milliner. She's working to support their child, and you can tell this from the box of ribbons that's falling to the ground as she thrusts herself forward, offering Tom her purse, probably her life savings, so that he's not arrested for debt. She's almost presented as an angel of mercy coming to relieve him from the complete pickle he's got himself into. However, as we'll see later in the series, he doesn't take the opportunity to be with her and to reform his life.

BRAGG: So after we get this beautiful sort of aria, we get a high note. 

[singing]

She sings this beautiful high B. When the soprano sings the high note or the tenor sings the high note, or any opera singer sings a high note, it's like, “Okay, we're at the end of this,right?” But he tricks us, and there's a hold in the music. Then it continues unaccompanied. 

[singing]

“A colder moon, a colder moon upon a colder heart,” and then the orchestra comes in. And so at that moment, we understand that there's going to be more, she's not done saying what she needs to say.

CASH: At some point the Carter family, the First Family of country music, started working with my dad on his show. It was Mother Maybell Carter and her three daughters, Helen, Anita, and June. And my father, you know, listened to them as a little boy, you know, when they had a radio in the house that they had to conserve the batteries at night and he was allowed to listen for an hour a night. And here was June Carter and she was young and fun and feisty and funny. And my mother was at home with the children and sad and missing him. And I think it was just too much temptation, so it was, it was a heartbreaking time for my mother. She desperately wanted him back, desperately. And you know, a lot of times it -- he didn't come home. His heart was leaving and hers was breaking.

Second Recit

BRAGG: And then we hear a voice and it's her father. 

UPSHAW: “Anne, Anne!” He's calling for her. She’s suddenly sort of, I feel, brought back to reality a little bit.

BRAGG: And we get “My father! Can I desert him and his devotion for a love who has deserted me?”

UPSHAW: And it's that moment she realizes that she needs to leave and go to Tom.

BRAGG: She says, “No, my father has strength of purpose.” So she already knows that her father doesn't need her help, “While Tom is weak and needs the comfort of a helping hand.” Her hand.

And so she beautifully says so, so innocently and so sincerely, “I understand the man that I love and he needs my help.”

That’s the podcast Aria Code, from their episode “Stravinsky’s The Rake’s Progress.” Go listen to the rest of this excellent episode, and the rest of season three of Aria Code, wherever you get your podcasts. 

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