A quick warning, there are curse words that are unbeapted in today's episode ...
If you prefer a beeped version, you can find that at our website, thisamericanlife.org.
From WB EZ Chicago, it's the American Life, I'm Tobin Lowe sitting in for Ira Glass. The story of Sarah and Ethan's relationship starts with heartbreak. She had just gotten out of a 12-year relationship. He was separated after 13 years of marriage. Neither of them were particularly interested in jumping into something new too fast.
But their mutual friends thought, "Hey, they have that in common." They're both in their forties, both a little wobbly from their last relationships. They should date. Here's Ethan.
“I think they saw us both as like, people who didn't know what they were doing and thought”
maybe these two configured up together. That's both like, uh, sweet and maybe a little insulting. Yeah. Yeah, I'm going to take it as sweet. They hit it off, kept seeing each other, doing datey stuff, dinners, museums, blocks
in the park, and as weeks and then months went by, they advanced to the stage of hanging out with no particular plants. At one point, a kind of big thing happened, a friend of Sarah's died. Ethan knew how hard she was taking it, so he asked her, "You want to go to a ballgame? Take your mind off things?"
And it felt nice to let him take care of her in that way. It's now been 10 months. So you're in contact pretty much every day. You see each other regularly, you're not seeing anybody else. Is here boyfriend, then?
No. Obviously, this is Sarah. What do you refer to him as? I guess I use his name. Okay, and I will often say, he's the person I'm sort of seeing.
The sort of feels crucial there.
Or kind of, or I guess I'm, there's always a bit of a qualifier.
“Gosh, I think both of us have sort of a void using the boyfriend girlfriend terms.”
In fact, a couple weeks ago, they had a conversation about whether it was time to have the what are we conversation, and they decided to put it off. Ethan and Sarah are your classic example of, "Let's not put a label on it." You know couples like this, and I understand that people do this, but I'm always a little like, "Why are you doing this dance?"
Like, if it looks like a boyfriend duck, and it quacks like a boyfriend duck, it's just a boyfriend duck, right? Some of my friends will refer to him as my boyfriend, but... You're making a face. Not very comfortable with it.
Why do you think that is? What is it? Bring up for you. What is the feeling? It feels like if we put a label on it, Gosh, we're going into the tunnel again.
Like, it feels like it could last a long time, and that's a little scary. And if I'm someone's girlfriend, I want to be prioritized in a certain way, and I'm going to be reciprocal in that, is not something that I'm comfortable with right now. There are other considerations that are thinking about. Like Ethan's daughter, who was 10, and still doesn't really know about Sarah.
He's thought a lot about what putting a label on this thing with Sarah would trigger.
“If Dad had a girlfriend, I think that would feel very significant to her.”
Yeah, I think that that would... I think it would feel like a big deal to a 10 year old. When I was hearing this described to me at first, I was like... To be honest, I was like, Oh, it sounds very like teenager-y immature. We don't want to call it anything.
And now the more that I've talked to you, it's like, oh, it's a very mature... and sort of being honest with yourself about what you want, and what comes with putting a label on it. Oh, yeah, absolutely, because there's expectations, and having no expectations is so much nicer right now. I get what she's saying.
Labels, they're powerful.
They can distill you down to a single word. Can't get stuck on you without your permission. I still think about the day when my dad introduced me as his husky boy. I thought about that label for years. Today on our show, we have a story of a woman who's been more than a decade trying to get a particular
label put on her. And we see what happens when a label that's holding someone's life together gets peeled away. And also, today, I have the all-powerful label of host, so I am commanding you to stay with us.
.
You didn't hear this for me, but normal gossip could be your new favorite podcast. Join me, Rachel Hampton, as I share the juiciest gossip from the real world. In every episode, we anonymize some gossip sent in by a listener, and we share that story with the special guests. No more gossip is available now on YouTube, and all of your favorite podcast platforms.
It's this American life, Act One, Last Shift.
The label being assigned in this first story is temporary.
It's a label that can feel meaningful and definitive. You know the thing will end, whatever it is. But temporary is also a flexible term. Your life on Earth is temporary, but it can go on for a hundred years.
“The temporary label plays an important role in the US immigration system,”
for something called temporary protected status, TPS. TPS is a status given to a country all at once. It allows eligible people from that country to live and legally work in the US. If their home country has become unsafe or unstable, for instance, because of war or disaster. And if war or disaster goes on, TPS can be extended.
For some countries, it's been extended for more than 25 years.
Wars can last a long time.
The 32nd earthquake can cause damage that takes years to recover from. Last week, the Trump administration succeeded in ending TPS for people from Haiti. A judge removed the last roadblock. It affected a huge number of people, more than 300,000 Haitians. Many have been here in jobs and lives far longer than anyone would consider temporary.
So, 300,000 people were facing an end all at once.
“Hanajafi Walt spent time last week with one of them at her job, a woman named Marie.”
And no one, including Marie, knew which day would be her very last on the job. Here's Hanajafi. I'd heard about Marie before I showed up at the nursing home in Boston. Her boss told me he was losing his best CNA. The pride of the building, he said.
CNA is a certified nursing assistant. Families love Marie, he told me.
When I walked in, the senior nurse leader, flowing net, walked me up to the second floor,
pointing out details and people along the way. And she pointed to a room and said, "The woman staying in this room refused to be moved from her chair to the bed by anyone but Marie." If Marie is not here, we have to make sure that we go and tell her why Marie is not here. Why, why didn't we?
Because she's used to Marie. She's used to her and Marie treats her with respect. So, she really is an exemplary CNA. I've worked with many seniors. I know everyone, this is Marie. Oh, hello. I've heard too much about you.
This is a never Marie. Yes, this is another Marie. Apparently, there are a lot of Marie's in this building. Marie's a lead, Marie Claire, Marie France.
“Asked for a net, how much of the stuff here is Haitian?”
And she says, "Oh, we all are except for, and she scans the floor." She is not Haitian, but I think I see three CNAs already in all three of them are Haitian. And then, a small woman in glasses, gold hoops, ponytail, and pink scrubs, walks purposefully down the hall toward us. Anna, he is your Marie.
I've heard so much about you already before even meeting you. Okay, I'm here a long time. How long have you been here? 12 years. Do you know that you have a reputation here as being one of the best?
Yes, I know. But Marie is not particularly interested in talking about this or dwelling on her talents. Marie's not a dweller. For a person who's a star, she's the opposite of flashy. She's focused, quiet, exceedingly polite, but I'm asking questions, and I can tell she's distracted,
glancing at the rooms behind me where her residents are. I have somebody in the back for now. I'm gonna stay still. Okay, so I'll sit down. Okay, okay, okay, okay, okay, thank you.
Thank you for coming. Oh, I'm so glad to be here. From there, Marie is in motion, and she invades me to follow her from one resident to the next.
I'm coming, I'm coming.
I'm coming.
“In and out of bathrooms and linen closets, between bed sides,”
humming evangelical hymns to herself as she changes sheets.
And cleans up messes. I thought we were gonna talk about this huge change that was about to happen in Marie's life. About what is lately her last week on this job. But actually, it seems like I'm gonna watch her do her last week on the job. And the other nurses and CNAs are watching me and my microphone,
and asking each other, what's she doing? She's following Marie? Why? Because she's good at her job, and then they want to talk, and add on, saying, "I can also tell you how good Marie is at her job."
She never say no.
She always be there for ai-boy-body.
She's just really special. She knows all their little quirks and, you know, she'll be training someone and say, "You know, they like a sock on their left foot, but not on their right." And, you know, she remembers all those things that you don't have to remember to do your job. She's great, so.
“And do you know what's happening with Marie this week at the end of this week?”
I do not know. Okay, yeah. I get out of the conversation awkwardly and have a couple more moments just like this, where I gather bit by bit that nobody here knows the major thing
that is happening in Marie's life.
Marie has invaded me here, knowing I'm doing a story about people on TPS, about her job ending. But the people she works with don't know her job is ending, or that she's on TPS. Even though most people who work here are Haitian, some of them are on TPS, like Marie is, but most aren't. The woman on staff named Nancy told me, "We give each other privacy."
We don't ask questions directly because we don't know who have it, who doesn't have it, and things like that, you know, so we just stay. Talks sides to the group.
“Nancy said, "The date of the Supreme Court allowed the Trump administration to end TPS”
for Haitians. The staff got together at the end of the day and talked about how sad it was, the TPS was ending, how scared people were." She said Marie in particular was very sympathetic in those conversations toward our other co-workers who have TPS.
But Nancy clearly did not know Marie is one of those co-workers. You know, and she was feeling for everybody else. Everybody was talking about it. Especially Marie, because she's very caring like that for everybody. How's it going? Yeah. I catch Marie coming out of a room and pull her aside for a minute.
In your co-workers have been asking what I'm doing, and I've been saying I'm following you, and nobody seems to know about TPS and that stuff. Do you want me not? I have not said anything. So you haven't talked to people here about it. Can I ask why?
Yeah, okay. If something happened, I can't come. I wheelchair them, but for now, no. If something happens, you would tell them on that day. Is that what you mean? Yeah, okay. I'm not going to, after 12 years, I'm not going to just disappear.
No, I wheelchair them. But for now, no, I don't tell them anything. They don't know anything about me. I learned the more I talk to more people that this silence is common. There are so many people on TPS moving through their workdays in restaurants, airport schools, quietly knowing it could end at any moment and not telling anyone.
Over 300,000 Haitians on TPS, that is so many people. As immigration statuses go, temporary protective status strikes me as a very strange one. It's not an employment visa where there can be a path to a more permanent status, like a green card. TPS offers no path. It leads nowhere. You can have it for years. You can have it for decades. It can be terminated at any time. The executive branch has discretion to offer TPS and discretion
to take it away. With other immigration statuses, there's a process, there are steps to take and a system for appeals. TPS is more like a gift from the king, just a thumbs-up thumbs-down,
Kind of system.
But President Obama was into TPS for Haitians back then, and President Trump today is not.
“So it's like a vibes-based immigration status. When I asked Marie, how she was thinking about TPS,”
she'd just shrug. What's there to say? What can I do? She told me in Creole through an interpreter. I understand the danger that's hanging, but there's nothing else I can do. She doesn't have a lot more to say about that, and maybe there just isn't a lot more to say. So how was this going to go? The actual end. For weeks, it was unclear when exactly the TPS termination for Haitians would go into effect like what day. And employers were constantly refreshing
government websites and checking the news to try to figure out when to tell their employees they
couldn't come back. And how should they do it? Marie's boss Colin told me he was trying
to figure out what was the least disruptive, least public way to do this that would protect his employees' privacy. Should he just take them off the schedule? Put them on PTO and tell everyone
“their own vacation, and then they just won't come back. Should he do that now? Should he wait?”
The deadlines kept changing. TPS was ending on Friday, then it seemed like maybe it was Monday. But at the end of the day on Monday, I call them, and it seems like maybe it wasn't Monday. I have no idea. No idea. Let's go on right now. I've heard nothing. It feels like yet today's the date, but I'm not getting anything from government sorcerers that says absolutely it's the day. Is there someone to reach out to?
I can't answer that question without being sarcastic. I mean, I don't know that there is somebody. Tuesday, I walked into the nursing home at 245. I saw Colin on my way into the building,
sitting at his desk on the first floor by the entrance, but in down large beard he's 40 years old.
I told Colin, I talked to Marie and said I'd be here today for the start of her shift at three. And he said, I did meet with HR today and we have made a company wide decision that at this point we are going to take anyone affected by TPS off the schedule. The lack of guidance. We have to move them from the schedule. Wow. Okay. So is she working today? She's working today. She's working today. Did she know that? I have not heard her yet. No.
Waiting for Marie to come in. I'll let her get settled and I'll have a conversation with her probably around four or five o'clock. How come you wouldn't just tell her when to get here? I don't think it's right to kind of grab somebody walking through the door. Hey, you're walking through the door. Let's so I want to let her settle and kind of have her normal chain and then I'll kind of sit down and have a conversation with her. When we both have time and space to do it.
When I do want to have a space space conversation. Meanwhile, Marie is already here. She's upstairs. She came in through a different door. Her co-workers are greeting her as she sets up. Hi, beauty, how are you? She's in lavender scrubs and a gold and silver head drap, arranging her cart for her shift. Marie doesn't just grab one of the pre-stocked carts.
“I like to fix my cart. I have to fix it. You have to do it yourself. Yeah.”
I know. I have to tell her, bad, shit, gown, pillowcase, fiscal. All of a sudden, everything Marie is doing becomes the last time she will do it. Counting the blankets and stacking them neatly on the middle shelf. Fitted sheets, diapers, and cream go on the top shelf. Pushing her cart to room 101 as the morning shift heads out.
It's hurting all of them. Drops their phone. Checking on each resident. I'm Marie. How are you? And if you get today, it was my day. I like your silver. Thank you.
Pretty good. You got to watch out the sun. When the sun glasses are. Next door, room 100 is full of visitors. Marie maneuvers quietly around the family, arranging sheets, wiping surfaces, filling water cups. This job is a series of endless small gestures. It's delicate. It's close.
Difficult work. Marie is both productive and invisible.
She props a bath and then gently guides the family on how they can be helpful
as she washes them changes their 94-year-old mother.
No, that's not what we're talking about.
“Mom, mom, mom. Mama. Mama. We're just out there. Okay?”
Marie is on her way out of room 100. Arms full of dirty linens. When Colin enters the hallway to her unit. He walks toward her. But then keeps going. He walks right by her. It looks like he made a last minute calculation that this is not the time. Marie rolls a cart of soil linens to the next room.
Pulls up next to a coworker and whispers to her. Ask her where another CNA is today. Marie says, "Did she call out?"
The coworker says, "Yes. I think it's about the TPS thing. They closed it."
Marie says, "That's what I heard." Then, a call button lights up. She heads toward it, back down the hall. You okay? Do you change? Okay.
“Then, she's on her way out of that room and I interrupt.”
And I ask, "Have you checked in with Colin?" She told me anything happened. She would have called me. Is something when he came here earlier? We did not talk.
And you haven't asked.
You haven't asked him anything.
No. No. No. I don't want to embarrass him. Why would it be embarrassing for him? Because it doesn't like me to leave. He doesn't want you to leave. Yeah.
Yeah. It's not happy to see me leave. I'm not going to ask him anything.
“Next to us, a man in the hallway with bright yellow socks”
has been using his long legs to drag his wheelchair back and forth. Saying, "I don't know. I don't know. I don't know." And a nurse, Leanne's close to Marie, and says, "Could you help my friend with the catheter?" For the catheter? Yeah. Yeah. Yeah. Come. Come. Come.
Colin comes by again, glances in the rooms, but Marie is in the bathroom. Oh, what a lip and sound. She empties the catheter. As this is happening, Colin does a lap. Marie pushes the man back into the hallway and Colin
spots her, coming out of the room, but the man with the yellow socks is agitated and pointing at his pants. He wants Marie to change his pants too. Oh, he wants to turn on the repents, come. So they're back into the room. Take your time. No, no, don't slide.
Colin disappears back downstairs. How do you end a 12-year career without interrupting, without disruption, without anyone noticing? Colin is looking for an opening to do this quietly, but there is not one. This is a person who is busy and needed.
CNAs are hard to find and hard to keep all over the country. The average time people say in these jobs is two years. And here's Marie. Her boss doesn't want her to leave and she doesn't want to leave. He doesn't want to embarrass her, and she doesn't want to embarrass him. This is not the version of removing people that we've seen so much of in the last year and a half.
It's not people grabbed in public, pulled out of cars, and dramatic, sometimes violent videos. This is a silent play, being performed in workplaces across the country. The quietest ending everyone involved can possibly pull off. By 530pm, when the dinner trays arrive, Marie is moving between residents, arranging bedside tables, delivering food trays.
A visitor tells her, "We're going to head out now, my grandma's alone, keep an eye." Marie reassures her, then spots a man who's come to have dinner with his wife.
Marie finds a folding chair, places it behind him without saying anything, an...
Meanwhile, Colin is on the second floor now, and he's not leaving.
It can hear him faintly somewhere on the other side of the nurse's station.
“Talking to some guy about printers, I think.”
At 6pm, Colin just walks straight to Marie's unit and scans the area. He sees her carrying empty dinner trays. He says quietly, "Hey, Marie, you got a minute?" Sure, she says. She places the trays down and follows him down the hall. They go into a room with an interpreter. It takes seven minutes.
Colin doesn't want me to record, and when Marie comes out, it won't turn the recorder back on. She says to me, "Well, they're taking me off the schedule. For now, until he has more information. This is maybe the end." I tell her, "I'm sorry." She says, "They said I can go home now or finish my shift. It's up to me. I have the choice."
“And then Marie does something I have not yet seen her do.”
She talks about how good she is at this job. She says, "When I started here in 2014, my salary was very low. Every year, they saw the lamp working and the work I've done, and every year they gave me more. Right now, I won't tell you how much I make, but it's double where I started. I tell her, "I'm sure you deserve it." She gets choked up and says, "Thank you."
Then she says, "She's decided to finish her shift and she should get back to it." She stands up and walks back down the hall. Hanajafi Walt is a producer on our show. Coming up, a comedian walks into a bar and walks out with a medical mystery. That's a minute from Chicago Public Radio when our program continues.
It's this American life. I'm Tobin Low sitting in for Ira Glass. Today's show, label maker, a show all about the power of labels. Or at act two of our show, act two, diagnose me maybe. So the whole reason I've been thinking about labels lately is because of this next story we're doing today. It's about Janet McNamara, very funny comedian, who have this odd thing happened to her 15 years ago when she was first getting started.
What happened was this one night, she's performing at a comedy club in Boston where she's proudly from. I think all Irish Catholics are. Anyway, she gets off stage, goes to the green room, when the owner of the club stops her. He just kind of said, "I got a curiosity." What's that thing when you look up in the air and you dart your eyes? I do this thing. I have really bad memory recalls. I look up in the air a lot when I can't think of a word or I can't think of
“what I'm going to say next. And I said, "That's what I do when I'm thinking." And he said,”
"Have you ever been tested for autism?" And I said, "No, I've never considered
that I'm autistic before." Literally, as nobody has ever shared it to me before. And where was this comedy club? It was called "Dict artist's comedy vault." And this guy dectorty, he's the first person who asked me if I was autistic. Oh, it was the namesake of the club. Yeah, he'd named a club after himself. Yes, correct. Janet kind of brushed it off, thought it was sort of funny. And she is a comedian, so she started
getting on stage around Boston, telling the story about this guy asking this question out of nowhere. You got laughs. But also, after the show, people would come up to her and say, "Hey, I'm autistic just to let you know you're also autistic." They would say it that bluntly. Yeah. And how would that feel? How would you react? I would say, "I don't think I am." Janet says, as a kid growing up in the '90s, she'd been tested many times for learning
disabilities for anxiety. Never once did any of those medical professionals say the word "autistic."
When she talked about it with her family, her friends, they'd say, "Yeah, it's a little weird that you get your haircut in slow increments," so no one says, "Hey, you got a haircut." But mainly, they said, "You're not autistic, you're from Boston." But the fact that people kept saying it to her after shows. It raised a curiosity. She thought, "It's probably nothing, but what's the harm in asking my psychiatrist if he thinks it's possible? Here's Janet talking
On stage about what this all led to.
anymore. Now they call it the autism spectrum. They unnamed it. He was a Nazi.
“Asked for it was a Nazi. Yeah, I read a book.”
I am a writer of the test, and the guy he just looked up from his notebook and he goes, "Well, people with asked figures generally have above average IQs." So... I'm not smart enough to be mild the autistic. Is what that doctor told me? This, again, was her actual psychiatrist. Janet decided to let it go partly because this was back in the 2010s. In the idea of an adult
getting tested for autism, it just wasn't in the air the same way it is now. She thought, "Okay, that's it. No need to keep pushing for a test." So for years, autism was just a funny bit on stage, part of her stand-up. But offstage Janet had a day job, and what was happening there would turn out to be not so funny. Offstage Janet had found what she thought was the perfect job. She was an accountant,
worked her way into it after being a bookkeeper for a plumbing company right out of college. She liked accounting because she was essentially a problem-solver. looked at ledgers, excelspred sheets, pointed out where there were errors, and her boss loved her. Because Janet got her job done quickly and efficiently, no small talk, no bullshit. She even got raises regularly. That is, until one day, she got a new boss when who liked
small talk, wanted more group meetings, more socializing amongst co-workers. Early on, this new boss asked Janet to meet one-on-one so they could get to know each other. And she said, "You know, I have two kids I enjoy hiking, and then she turned around and showed me her two kids with a, she showed me a, she, she turned around and picked up a framed picture of her two kids and went to hand it to me. And I just said I could see that from here.
When I walked into our office, I saw the pictures of her kids. I immediately knew when I walked into the office. She has two kids, they're about 12 years old, the boys older than the girl. Okay, cool. I know all this information. I know this, I got it. And then she just tells me verbally, and then hands me the picture, and I'm like, I already know this.
“Like, why are we talking about this? You have a picture, that's why you have a picture on your desk,”
is so that people don't start asking you if you have kids because it's a picture on your desk. Janet talks interact about how things started to sour for her in the workplace. Let's have a hard time at work at the time. Let's have a hard time at work because of my personality. Yeah, they said I was rude at work. At they said I had bad tone. They said I had bad tone in my emails. I was like, how could you have that tone in an email?
What's it singing? I was like, you people need to relax. I told my boss to relax. During a performance of proof at plan. And even though she joked about it on stage, it was serious. It seemed like she might lose her job. And what made it so difficult was that it felt like she wasn't
being asked to improve her work. She was always good at that part. It was like she was being asked
“to change her personality, her fundamental way of being. Which, how do you even go about fixing that?”
She became so anxious and stressed about it. She took medical leave for a while, hoping she could figure out a solution. And then she went to talk to a doctor about what that might look like. Like a more private desk away from the chatter of the office, the ability to sit out those meetings with large groups of people. She asked the doctor if he could help her ask for these accommodations. And he said, those sound like what you'd ask for if you were autistic. Again, that label.
Janet decided to look into a diagnosis again. This time, because the need had become dire.
Janet goes for her first official autism test, which this time was an actual real deal test.
Testing for autism by the way is complex, because there's no blood test. Instead,
There are usually multiple sessions during which the tester is looking at soc...
sensory issues, repetitive behaviors, or fixated interests. And then they take all of this into
“account to assign a diagnosis. Which is what Janet went through this time. I don't know if”
anybody's ever had one. It's like this whole thing. It's like a three-day thing. You're like, look at pictures of people and they're like, "They look happy. They look sad." And I said, "Service." And I was perfect. I did everything perfect. And I didn't get the diagnosis. Okay, I said, I didn't get it. And he knew I wanted it too. And I didn't get it. And I'll tell you what happens. At the end of the day, the guy he just came back, and he just looked at me right in the eye.
Which I did not care for.
I swear, he just looks at me right in the eye and he goes, he goes, "You are so close." I swear, he goes, "You're so close. You just didn't quite hit all the criteria."
“And the criteria didn't hit. The only reason why I'm not artistic going to him”
is because the tags in my shirt don't bother me. Yeah, I don't have sensory issues. I was pissed. I was already to go back to work and be like, "Hey, I don't have to look at you." It's not that a rude. It said, "I don't understand."
It turned out I'm just rude.
You could tell that a rude because the tags in my shirt don't bother me. And that's a different screen, rude and artistic. It definitely felt like I had no choice but to change. It felt like I had no choice but to start playing the game, which is talking about the weather and saying hi to people and I did like start learning
people's kids names. How long do you feel like you were able to keep that up at that job specifically? Oh, like three months. My brain just wasn't. It's so hard to describe it. It's probably what dementia feels like. And then you know, this isn't hard, but your brain just can't do it. Like I just couldn't function. Janet Cycle drew several corporate jobs after that. She said she'd do well but then
hit a wall as the demands of interacting and socializing would increase. She have to quit or face being fired. That's the cycle Janet's been in for the last decade. Trying to avoid situations in everyday life that would make her uncomfortable. But then when they do happen, talking about them on stage for laughs and how she still can't get a fucking diagnosis. So she's just kind of been toughing it out. Until recently, when she had an experience that flipped
her thinking about everything, she took a kid to the movies. Kitchie was babysitting. Kitchie knew well. And at the movies, this kid started to cuddle with her. That's little kids do. And it was so uncomfortable to me that she was joking my arm. But I also understood that it was a little kid and that you can't just tell a little kid to like, like I understood that it like it was like harsh way of showing affection. And I just felt so stuck. And I started like crying.
Because you had to deal with it. It was your problem to deal with. I felt like I'm the adult. I just need to like take this. Janet went from discomfort to just being flat out mad at herself. How awful. How awful. Can you are you as like a person if you just want to say to a little kid, like stop touching me. Like stop cuddling with me, stop showing me affection. Like it just doesn't feel good on a human level as a person to not want to cuddle with it, little kid.
And for that to be an overwhelming experience. She told all this to her current therapist.
“And her therapist said to her, I think we should revisit getting a diagnosis. I think it's right”
for you and the other testers got it wrong. Janet was ready to stop blaming herself. So she agreed. It was very much a maybe there's nothing wrong with me. Maybe my brain is just why you're different. And maybe I need to not beat myself up. And that's when I interviewed Janet when she was trying
Yet again to get a diagnosis.
her results. When they did finally come in, she was standing outside a bar. It was 11 pm.
“She opened an email with a report. And then the next night she went on stage in Portland,”
Maine, and dropped the news. And the lady was like, I don't know what's going on. What you're definitely autistic. She was like, you're autistic because you are interested in people and you're just not interested in things that are boring. And you're not interested in boring people who don't do puzzles correctly. And she said, I'm a rigid personality. I'm rigid. And I said, I'm not rigid. I'm just
most of the time right. And we talked about how my least favorite thing my therapist says,
sometimes my therapist will be like, hey, two things can be true. And I'll be like, yeah, I agree. Two things can be true. But in this case, one thing is true. The next time I see her, she tells me she's pretty stoked about it. But not for the reason I thought. She tells me about a recent experience interacting with a woman in a class she's taking. I sit in a specific seat every day. And I walked in and she was sitting in my seat. And she said to me, I'm sitting in your seat,
“you are going to move. And I said, no, it's okay. I'll sit over here. And she was like, are you sure?”
I mean, you had this like back and forth. And I actually said, actually, I really want to sit in that seat. Can you move? And she moved. And she wasn't upset at all. She was perfectly fine with it.
And I've just never felt that scene before where somebody's sitting in my seat. They saw my face.
They saw I was distressed. They didn't see it as a control thing. Or like, I'm taking it. Like, they didn't take it personally that I was like, you're in my seat. Like, it felt very good. Yeah. And there's no way she knew I was artistic. There was just something about the way I approached it, which is that I understood. I think six months ago, I would have said, she's an asshole. She's sitting
“in my seat, what's wrong with her? Why would she sit in my seat? I would have taken it personally.”
Like, she was talking with me. She was messing with me by sitting in my seat as opposed to knowing that it's something that I'm specifically sensitive about. But I want to sit in place. So, yeah. It seems like it brings up a lot of emotion for you. Yeah, it's weird. It's like a different way of feeling seen, even without telling people about the diagnosis. There's something different. I don't know exactly how I'm approaching people differently, that they're not taking it personally,
that their behavior is affecting me. It's quite, I had no idea that it would be so different. And I didn't realize that you don't even have to tell people, I'm just the way I'm approaching people is different. It's true. When we sat down for this last interview, we were waiting for the studio to be set up and she said, I'm fine if we don't make small talk while we wait. Pretty matter effectively. And I understood. So we sat there in a very comfortable silence.
Janet McNamara is a comedian. You can watch her full special, not smart enough on YouTube. Act three, the last description. You know, when you get down to it, labels are just our way of pointing out what we think is remarkable about other people. That's right, our Alfred Junglies argument. He's been thinking a lot about what we notice in each other, especially as he tries to describe someone very close to him. Here's Alfred. Not long ago, I was reading in a magazine profile,
a description of a person who, quote, has a prestigious white beard, wavy gray bangs, and dark beatling eyebrows. A photo of the person was included. And as I looked, I admired the efficiency of the description. It did not say that the man had two arms and a nose. These details were assumed. Reflecting on this, it occurred to me that when one describes a person, one is also describing
How that person deviates from the norm.
someone I never met was supposed to pick me up from an airport in the Midwest, and I offered
“a succinct description of myself. Asian guy with too much luggage, I texted. I walked out of the”
airport, towing two suitcases, a carry-on, and a backpack. I heard a stranger shout my name. I was recognized before I'd even made it to the curb. Description draws attention to what is different about a thing. Asian guy with too much luggage, is a good description in Cedar Rapids. Less so and so. The greater the focus on what is most different, the better the description. In an online support group, I attended for spousal loss. People often describe their dead spouses.
The descriptions usually followed a formula. The points of variation included their job.
The dead spouse was an accountant, a stormy nature, a health care worker. In personality,
they were stubborn or love to joke. There was a woman who had liked motorcycles, a man who had
“been a tender father to kids who were not biologically his own. Sometimes we shared pictures.”
Even as I looked at the pictures and listened to the descriptions, I found it hard to understand that they were once alive. When someone described their spouse as stubborn, I took it to me and their spouse had been more stubborn than the average person, but I wasn't sure what this really said. Most of a description goes unsaid. Lately, my reality has transformed without my noticing, and I have been struggling to describe it.
My father called me the other day from Korea, and it gave me a chance to try. I described the weather in my new hometown in the Midwest, the one where I had been picked up at the airport, saying that it was in the 70s at the moment, late in the afternoon, that I was 10 minutes from campus, where I decided to go back to school for a writing program, and that the city was hilly and off lap. He asked about my new friends and classmates, and I told him what I've been
telling everyone, mid-20s to late 30s, everyone seemingly smart and nice. I told him about my studio apartment, that there was enough room that it got good light, but the places I could walk to from the apartment. But there was something else hovering over our conversation, another picture that was not being described. It was what my life would have looked like if things had gone according to plan, and how this current situation far from anywhere it ever imagined may
or may not have differed from that plan, which might also inform whether or not I was doing okay,
and therefore whether or not my father needed to worry. It was the second picture, this other life
that we were talking around, and the extent to which my present life may or may not have varied from it,
“that our conversation was also about. I remember one time when I felt I understood something”
about one of the other dead spouses. Instead of her spouse, a woman described an electric razor. It had belonged to her husband, and he had used it on many mornings. She used to hate the noise, but now that he was dead, she missed the sound of the stupid thing when she woke up. Somehow he came alive to me then, though this detail was routine and did not distinguish him. She held the razor in her hand and flipped it on for us.
People want to know what she looked like, children especially want to see pictures. But in the last five years of her life, my wife's most noticeable characteristics were often related to either cancer or treatment. She lost and regrew her hair more than once, and sometimes her rotation of wigs, none of which quite suited her. She gained and lost large amounts of weight and over time her face swelled. When one looks at a picture of her from these years,
one often sees a sick person before anything else, while at other times one sees someone vibrant and healthy. I am not sure which version to describe. More variables. She was 28 when she was diagnosed with stage 4 cancer, 33 when she died. Her driver's license says she was 5 foot 6 and 115 pounds. With brown hair and green eyes, although the weight was incorrect, perhaps one of those things she'd felt out as a teenager
and cared over for years. It became correct again as she seconded and then dropped well below that number. In my memory, her eyes are more brown than the green that was documented.
I could say that when she was healthy, her hair was thin, often not much long...
length. Sometimes worn with a headband and usually not long enough to tie up, although I can't
“even be sure about this last part without checking photographs. When she was young, her dad used”
a teaser about having a big head. Sometimes I offer that she was white, but usually I wait until the question is asked. Sometimes I envy the white person with a dead spouse, of whom the question would be less likely to be asked. In her eulogy, I describe the thing about her that I found most distinctive.
The way the air around her would transform and still, and her entire body react when she felt
something deeply. Whether she was encountering a view of the ocean, the dive of fabric, a memory. In these moments, she might whisper or cry, and I felt that if I touched her skin, she would dissolve into vapor. In those moments, I could also see the young child who had been too sensitive to the world. In family lore, she had been a problem child, emotional and inconsolable, prone to tantrums. A sense of injustice followed her throughout her life,
and still got the better for sometimes. Perhaps for this reason, she was a quick and firm judge of character. She gave me a list of people she did not want at her memorial. I can also describe those less obvious distinctions that reveal themselves only after long periods of attention, that she tilted her head slightly as a greeting when she walked towards someone she knew. That inner sleep she raised her arms into the air and slowly scratched one and then the other.
That she became nervous and reached from a hand when an airplane is about to take off. Yet increasingly, these details feel irrelevant. As time passes, she becomes more to me.
“The things that made her just like other people. I think of two arms and two ears,”
and a nose that sometimes ran. She owned socks and scarves, wrapped a towel around herself after a shower, wrote cards, wrote the bus, walked around puddles, opened and closed curtains, listened and asked questions, got hungry and tired, sometimes wore sneakers. She was like anyone else, which is to say that simply by breathing she created life in atmosphere. This increasingly seems to me the point, the description of the thing itself,
rather than what makes it different. I will try to describe one of the happiest days of my life.
My partner and I are leaving the hospital. She has been through her first year of surgery,
recovery, drug treatment. She holds in her hand the printout of a radiology report. It describes scanned images of her body, of her head, chest, abdomen, pelvis, the report for each of the four scans gives the following descriptions. Unremarkable, unremarkable, unremarkable, unremarkable. On this day, there is nothing about her worth describing.
Alfred Jungli is a writer in Iowa City. The Sessai was originally published in the believer, our version was produced by Diane Wu.
“You can tell a book by looking at the cover baby can't you see?”
Today's show, the person holding the label of producer was me. I was edited by our executive editor Emmanuel Barry. The people who put today's show together include Fiat Benin, Dana Chivis, Emmanuel Jochi, Cassie Halley, Adrian Lillie, Seth Lind, Molly Marcello, Andrea Marks, Katherine Raymondo, Sto Nelson, Nadia Raymond, Anthony Roman, Ryan Remary, Rubie Schwartz,
Alyssa Ship, Christopher Swatala, our managing editor Sarah Abduramann, our s...
David Castenbaum, and Nancy Updike. Special thanks this week to Betsy Johnson, Alan Phillips,
“Lindsay Nader, and Marta Hmilovich at Autism Speaks, Corey Andreas, Saeun Gong,”
Leading Age, Melissa Honeg, Evelyn Marta, Amina Dubuisan, Eve Vila, and the other workers on TPS who shared their experiences with us. Thanks also to all of our this American life partners,
their support is an essential part of our budget. Subscribe as a life partner and you'll get regular
exclusive bonus episodes, you'll listen ad-free, and you'll help us continue to make the show, join at thisamericanlife.org/lifepartners, that link is also in the show notes.
“This American life is delivered to public radio stations by PRX, the public radio exchange.”
Thanks as always to my boss Ira Glass, he's off this week working on his new radio show,
that American life, he says our show is old news. I'm like I already know this, like why are we talking about this? I'm Tobin Lowe, Ira Glass will be back next week with more stories of this American life. You can't tell a book by looking at the government. You can't tell a book, you can't tell a book, you can't tell a book, you can't tell a book. This is Ira Glass at the American Life. The Ocaf Carrier USA's Abraham Lincoln has been in
the news lately, because it's spent more consecutive days at sea than any aircraft carrier ever. Thanks to Iran War, and it's taken a toll on its crew. Next week on the podcast,
“we revisit a show that we recorded during another war, years ago, but what life is really like on”
their craft carrier. Sleeping around with 196 other people, there are lots of tedious jobs. Just filling up the vending machines. Is that your full-time job? Yes, filling up vending machines, all day, for 12 hours. That's next week on the podcast on the Ocaf Carrier USA.


