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Embodied: Season 2, Episode 7 Transcript

Anita Rao
I adore sleep. If it were socially acceptable to unironically call sleep a hobby, sleep would top my list probably every single time. I regularly sleep nine hours a night, and usually have very little FOMO about whatever it is I'm missing out on by choosing to hit the hay. My parents tell me that I've always been a good deep sleeper. In fact, one of their favorite stories to tell about my childhood is what happened when our family moved to India when I was just 10 days old. My parents were so worried about me being fussy or uncomfortable on the long flight that they gave me Benadryl, and I passed out for the entire journey. At a certain point, my mom started to freak out that my dad had done the medicine math wrong, because I stayed asleep much longer than expected. And I was still in that tiny newborn phase.

My parents certainly tell that story better than I do in a way that doesn't make them sound quite so negligent. But hey, I might have done the same thing. My older sister was two at the time, and who wants to wrangle a newborn and a toddler on a 10 hour flight. Plus, the only lifelong side effect seems to be that I'm a damn good sleeper. And I don't take that for granted.

This is Embodied. I'm Anita Rao.

Jade Wu
So there are two main types of sleep. One is called REM sleep that stands for rapid eye movement. And the other type is creatively called non REM. So these are the two main categories.

Anita Rao
Jade Wu is the kind of sleep expert you want to have on speed dial. She breaks down complicated science so that we can focus on the basics: What is sleep? And how do we get more of it? Jade is a health psychologist at Duke University who specializes in behavioral Sleep Medicine. She's also the host of the savvy psychologist podcast.

Jade Wu
There's really no place in healthcare that you can look where sleep isn't an important factor.

Anita Rao
Jade says it's helpful to think about these two big categories of sleep. REM sleep is when our brain is most active. And then there's non REM, which is made up of a bunch of smaller components.

Jade Wu
And so non REM sleep is further broken up into stage one, two, and three, basically light, medium, and deep. And during non REM sleep, there's a lot of body repair, growth, restoration of the body rest. And we're also consolidating memories. So the things that we're learning throughout the day, whether it's from a textbook or whether it's from the free throw line, we're actually continuing to learn and improve during sleep.

Anita Rao
This all helps us sustain something that pretty much allows us to tick as functioning human beings. It's called our circadian rhythm. This is essentially our internal biological clock that helps us go about each day on a regular 24 hour cycle.

Jade Wu
So I like to think about the circadian system, which is not just one brain area, or one thing that's happening in your body. It's a network of lots and lots — in fact, billions of different clocks in your body with one central clock in the brain called the suprachiasmatic nucleus.

Anita Rao
I'll repeat that one one more time: suprachiasmatic nucleus. Experts like Jade just call it S-C-N for short.

Jade Wu
And the whole system is like a busy train station with that one big clock tower in the middle and every passenger and train conductor and ticket salesperson has their own watch to look at, right? So imagine if that big clock tower just randomly changed its time or ran at a different speed, or you could never really predict what that was going to say. And everyone's desperately trying to tune their own watches to that main clock. How chaotic of a train station would that be, right? So ideally, all the trains are running on time. All the passengers and everybody has the same time on their watches that runs at the same speed. So the whole biological system is similar. We want all of our cycles to be running in sync with each other for optimal health.

Anita Rao
But let's be real, our internal train stations don't always run so smoothly. I know I told you that I'm a pretty terrific sleeper. But a good night's sleep is not a guarantee even for me. It's often the exact minute we turn off the lights that our minds flood with that toxic waterfall of worry and stress. A restless night is a routine struggle for lots of people. According to the CDC, more than a third of American adults don't get enough sleep on a regular basis. That's seven or more hours each night. But sometimes not getting enough sleep is just the tip of the iceberg. There's also the inability to get any sleep.

Jade Wu
I think most of us probably experience short term insomnia at some point in our life, and usually insomnia resolves itself after a couple of weeks, couple of months. But when insomnia becomes a long term, chronic problem, then it's almost universal what the factors are that are keeping it going.

Anita Rao
What are those factors?

Jade Wu
Yeah, so for example, if you think of the things that we intuitively reach for when our sleep is not good, like making up for sleep that we think we didn't get on weekends, sleeping in, canceling evening appointments or evening activities so we can protect our sleep. Things like staying in bed for a really long time trying really hard to sleep. It's very understandable why people might try these strategies, right. But unfortunately, they have this unintended backfiring effect where the longer we stay in bed not sleeping, the more we're teaching our brains and our bodies that sleep is a struggle. The bed is a battleground. It's not a good place to be, and it's a place where you should be alert and frustrated. And that ends up perpetuating the insomnia problem for longer.

Anita Rao
And one of the things that people recommend is actually getting like — if you are not falling asleep, instead of lying in your bed and telling yourself like: You know, it's better to just be in my bed than it is to be on my iPad out in the living room. Maybe that's not actually the case. Maybe it's better to get up and get out of your bed and change your environment so that your bed is associated with restful sleep. Is that right?

Jade Wu
Absolutely, yes. And it's really important to know that this recommendation is not meant as a tool to get you back to sleep immediately. You may get up out of bed and be up for the rest of the night. That could happen. And that's okay. What we're trying to do here is prevent your body and brain from learning that the bed is a bad place. So I would rather you just get out of bed, relax, think about something else. Do something else interesting. Because the number one thing to avoid is actually trying to sleep if you have insomnia. Insomnia is one of the very few things in life that does not reward hard work. And I like to think of sleep as sort of your shy but reliable friend — that friend that will come back and hang out with you. She really likes you, I promise. She will come back. But if you are really intense in the relationship — you're stalking her, you're trying to hunt her down, then she's gonna go further underground or run away from you. So just sit back and open your arms in this sort of inviting and relaxed attitude. Allow sleep to come to you when sleep is ready. And listen to your body. And that's the only way you'll know how much sleep you really need.

Anita Rao
For some folks not getting restful sleep is only one half of the hurdle. Andre Royal Senior was diagnosed with narcolepsy in his early 30s. It's a sleep disorder that makes both restorative sleep and daytime alertness elusive.

Andre Royal Senior
So I've had to become more productive, more qualified and just really double down on my efforts to, you know, try to at least have the appearance of being high energy, even if I'm not just because not everyone is accepting.

Anita Rao
Andre is the founder of the Suddenly Sleepy Advocacy Organization that helps people understand what narcolepsy really looks like. In popular culture, people with a condition are often depicted as falling asleep out of nowhere. And while that's certainly possible for folks with narcolepsy, the sleep disorder is a whole lot more complicated. There are a range of symptoms. No cure, and it can be quite tricky to diagnose.

Andre Royal Senior
You know, I think the more misunderstood components are like the hypnagogic hallucinations. And I describe that as being kind of almost caught between awake and asleep and not quite being able to tell the difference — like having a really vivid dream and having to differentiate between: Wait a minute. This isn't really quite happening right now. But it's kind of cool in some ways, because, you know, like, for me, I'll interact with my dreams. Once I kind of know I'm dreaming. It's like: Okay, this isn't so bad. But then there's times where you can have a really emotionally difficult dream, and it takes a while to come down from: Wait a minute, that didn't happen. But you're still left with a lot of emotions and feelings. And that can be a kind of a huge let down.

Anita Rao
Yeah, what does that look like in real time? Are you aware? Do you feel kind of drowsiness coming on and then you enter this hypnagogic dream state? Or what does it feel like physically in your body?

Andre Royal Senior
Well, physically it's more in between like when you're waking or falling asleep, and so like if I'm falling asleep, and I can have things get integrated into part of my dreams and not realize that they didn't really happen. Like it'll be a conversation, and you know, especially like in a relationship where it's like: No, I swear, you said this. Or [I'll] really believe that something happened. [And] it was like: No, you were asleep, you know. Or no, that didn't really go down that way. And there's an extra level of awareness, you know, because everything is very emotional and sensory driven. People can play on that, you know, and you have to take extra steps to know like, you know: How sure am I about this? Do I give them the benefit of a doubt? Am I being gaslit? Like, there's a number of things that go into play.

You know, and for as much as people talk about unconditional love, well, when you have a condition that, you know, you can't help, you find out exactly where the strings are attached. And you find yourself having to renegotiate and renavigate those former relationships, your current relationship and just expectations people have and the expectations you have for yourself. So there's a lot of identity that gets lost. And there's a grief, a grieving that takes place. But you have to, you know, not everybody has to accept what you're going through, but you have to still go through it. So finding a way to best improve your circumstance. And still be considerate without putting yourself last is really important.

Anita Rao
Sleep is just so much more complicated than it seems. Like Andre said, it's not just about establishing trust with your own mind and body. It's also about trusting the people around you. For folks with narcolepsy, especially, how comfortable they feel with their body's rhythms and needs at any given time can vary depending on who they're around and how those folks respond.

Jordan
I remember my record time for falling asleep is 30 seconds, and then [I] was out for the whole ride until my mom wakes me up when we get home or to our destination.

Anita Rao
This is Jordan. He's 15 years old and has dealt with narcolepsy since he was a young kid.

Jordan
I was diagnosed when I was in third grade. A lot of times I would fall asleep just constantly over time, even my friends would get in and just shake me and be like: Hey, you're falling asleep. I'd be like: Oh, well, thank you. I appreciate it. And it would just happen so much my mom started to get concerned.

Anita Rao
So Jordan and his family decided he would take a sleep test. He went into a room and researchers put a set of pads on his head to monitor his sleep.

Jordan
Wasn't very fun.

Anita Rao
After researchers analyzed his results, Jordan's sleep patterns showed he had narcolepsy. So he started taking steps to manage the condition. But he couldn't do it alone. Remember, Jordan was just in third grade when he was diagnosed. So throughout elementary school Jordan's teachers set up a room for him to go take a nap whenever he felt sleepy.

Jordan
But after sixth grade, I didn't want to do that anymore. Because it was kind of embarrassing having to go to sleep, and especially when my friends come to the nurse's office and just see me just sleeping there. And then I just open the door and everyone just turns and looks at me. Yeah, you know how that feeling? Or everyone just looks at you just like: Hey, guys. And so I would, I wanted to refrain from that. So we changed. I would start taking medicine that would help me stay up. That helped a lot.

Anita Rao
Have there been common misconceptions that you experience when you're talking to people about your diagnosis, like things that people assume about narcolepsy that you've come across?

Jordan
Usually when I tell them about it, I don't think I do too much of a good job, because they just assume that well for me for my experience that we kind of just fall asleep. When I was in sixth grade, I got bullied for falling asleep so much. That was middle school. So now that I'm in high school when I tell people about it, I guess they're somewhat more understanding. When I was in band class, yes, band class, I would fall asleep in band class. And I was right next to the timpani, the big drum — and loud saxophones in a room of 100 plus kids, and I would fall asleep while we were playing. I remember one time I woke up and just everyone was just staring at me. I'd be like: Hey, what's up y'all? Why are you staring at me? I mean, they would kind of ask me at times: How do you fall asleep so much, especially in band class when we're all blasting our instruments? I'd be like: Hey, I have narcolepsy. And I try to let them know how it's like something wrong with the cord from my brain to the rest of the body. It causes me to experience what they call daytime drowsiness.

Anita Rao
Yeah. Has there ever been anyone who was super supportive when you told them about it or has shown up for you in a way that you've really appreciated as an advocate or support throughout all of this?

Jordan
Well, for that, I would have to say, my mom. My mom is amazing. She set up, so basically, pretty much, I guess you could say, [they] see me as a kid at a disadvantage in school. So she would set up a system so I was at an equal playing field with the rest of the kids. My friends would be understanding — at least some of them — when I would fall asleep or whatnot. But other than that, I really say my mom and my family. I will say for other kids: Don't fight it. If you're tired, talk to a teacher or whoever, and let them know that you're feeling tired. It gets worse, at least from my experience, the longer you try to resist. So I would say: Talk to others, like teachers, if you're in that sort of environment and let them know that you have it.

Anita Rao
Wonderful. Well, thank you so much for making time to talk and sharing your experience. I really appreciate it.

Jordan
Thank you. It's, this is really cool. I never really thought I'll be able to talk about this. So honestly, thank you so much. This is— I never really would I think I'd be on a podcast.

Anita Rao
I just want to give a personal shout out to Jordan's mom. Living with a condition like narcolepsy creates its challenges at any age. But dealing with it as an elementary and middle schooler? I can't imagine it without some solid motherly love. Talking with Jordan and gushing with him over the power of parents, of course made me think about my own and our family's relationship with sleep. As a kid, we all had pretty strict bedtimes in the Rao household. Sleep and rest were all well prioritized. So much so that my parents wouldn't let us have sleep overs, claiming we'd get a bad night's sleep. And it just wasn't worth it. I'm still bitter about that one. But I've tried to carry the positive intention behind those restful practices into my adulthood. Turns out, my parents haven't changed that much either.

Sheila Rao (Anita's mom)
I literally like I get into bed, and I fall asleep really pretty readily. And it's nothing, like I don't even bother picking up a book. I put my glasses on the nightstand. I get my pillow in between my legs, do a few shuffles and kaputt.

Anita Rao
When I talked to recently with my parents about sleep, our conversation ended up veering in a surprising direction. The dream world. They both said that dreams have become a powerful avenue for reconnecting with their parents. Since your parents —Dad, I guess I'll start with you — since your parents have passed away. do you ever have like moments of connection with them in a dream? Has that been something that's happened for you?

Satish Rao (Anita's dad)
Very, very many times. I think quite often. I'm sure even as recent as yesterday, or something like that. And that is very interesting. There is more connectivity in the dreams with past events and more of my childhood people rather than current event people, or people I have met much later in life. You know, my childhood friends, my childhood places I grew up with, or parents and so on. So it's very odd, but that seems to be what the dreams quite often are about.

Anita Rao
Mom, how about you?

Sheila Rao (Anita's mom)
I you know, it's interesting what dad was saying. An I I feel like I'm sleeping lightly. So obviously my mom is not doing well. So I see her in my sleep in my dreams, and I think about her. But I don't know whether that is a dream, or whether it's me being half awake and worrying. I don't know where one starts and the other finishes. Do you see what I'm trying to say?

Anita Rao
Yeah, totally.

Sheila Rao (Anita's mom)
Like, I'll think about her and feel sorry about her. And then I may think about my dad too, you know, once in a while because you know he's not alive. So it's interesting. Is it your subconscious like bringing them back to you? You know, even sometimes I — if I'm really I'm thinking about my mom, I can actually literally feel a tear in my eye. Now, is that a dream? Or is it like...

Anita Rao
While you're asleep you feel like you're crying?

Sheila Rao (Anita's mom)
Yes!

Anita Rao
No, I know that that totally has happened to me before, and I wake up, and I have tears in my eyes. It happens. I think that's real.

Sheila Rao (Anita's mom)
I'm thinking about Dad thinking about his, his childhood, you know, is it that like those were times that you were very happy and pleasant. So your mind wants to take you back to that sort of thing. Yeah, it's super, super interesting. Dreams are interesting. For me, what happens is the feeling, you know, I know that I'm very very sleepy, and I take that cue quite seriously. And I just — if I feel like, you know, it's time for me to sleep, like, I just can be socially awkward, rude. Just get up and go. You need to go to sleep, you need to go to sleep. And whatever great fun thing is happening around you. And it's a blessing. I think it's a good thing. You should stay with it. Stay with it.

Anita Rao
I agree with my mom. Being able to consistently get a good night's sleep is a blessing. For so many sleeping soundly throughout the night is also a privilege.

Dayna Johnson
So things like racism and discrimination. These affect our sleep.

Anita Rao
That's coming up after a quick break.

Dayna Johnson
So a lot of my family members work in the automobile industry. And many of them are shift workers.

Anita Rao
Dayna Johnson is a native of Detroit — Motor City. And one thing was pretty common in her family.

Dayna Johnson
So they have these variable times that they sleep. And I started thinking about that.

Anita Rao
Growing up, Dayna wasn't that mindful of her sleep, but a light bulb went off when she was in school getting her doctorate. She was researching health disparities at the time.

Dayna Johnson
And I heard a presentation about various risk factors for cardiovascular disease and stroke. And the person mentioned sleep as a risk factor. And then I started thinking more about my sleep and the sleep of different family members. And it just intrigued me, and I wanted to learn more and learn more about how sleep can be a potential place to intervene in order to improve other health outcomes.

Anita Rao
So Dayna dug in and started researching sleep — more specifically sleep disparities. Today, she's an assistant professor of epidemiology at Emory University.

Dayna Johnson
And so when I started in sleep, sleep disparities were not as common in terms of being studied. But I noticed in the work that I was doing, as well as others, that we were consistently seeing across studies that Black individuals had shorter sleep duration, poorer sleep quality and more severe sleep disorders, such as sleep apnea in comparison to any other racial ethnic group.

And so some of the work I was doing at that time involved looking at the neighborhood context, so where we live. And so my work then and also today, we've continued to build upon it. And we've identified that neighborhood context is a unique stressor for African Americans in terms of their sleep. So what does that mean? So living in environments that are high in violence or crime that are perceived as not safe are all related to poor sleep quality, or sleep deficiency among African Americans, and we've seen this across studies.

And then we're also seeing that there are specific features of the environment such as air pollution. But the way that this relates to African Americans is that they are disproportionately placed, or more commonly live in areas that are disadvantaged. And sometimes this is below the individual level income. And that's a result of many historical situations or policies — I should really say things like redlining and covenants that happen where they were denied mortgages in certain areas. And so you have this generational disadvantage that has occurred, and so where they tend to live in these disadvantaged areas.

Anita Rao
While, it varies across age and gender, about 46% of Black Americans are not getting the recommended amount of sleep. And Dayna says the biggest racial disparities actually come from high income neighborhoods. As white people climb the socioeconomic ladder, better sleep tends to follow. But that's not always the case for Black folks.

Dayna Johnson
And so some of the other factors that we're looking at, even among those that are living in high income areas, are different stressors. And those are things that we are commonly seeing now on the news. So things like racism and discrimination, these affect our sleep. And so it can have a direct physiologic effect in our bodies that can present itself in different ways. In some ways, it's through interrupting our sleep. It can also present in rumination. So that means if you are constantly thinking about something that happened during your day when you're laying in bed, that can cause a problem in initiating sleep, for example.

Anita Rao
I'd love to close out by just circling back to your family. You mentioned a lot of them doing shift work. I know your mom in particular did shift work. I wonder how you doing all of this research and thinking about this has changed her relationship with sleep or her sleep patterns? Is that a common topic of conversation for the two of you?

Dayna Johnson
Good question. So probably similar to a lot of people in their moms, you know, it's, it can be challenging, but I will say I think my mother is very cognizant about her sleep. And it is something that she would like to improve. The challenge is, when you have done something for years, it becomes a habit. So my mother's been retired for a very long time now. But and this is something that I am quite interested in from the research perspective is, once you have done something for so long, how long does it take for us to be able to break that down in a way right, like, how can we change something that you did for 25-30 years? Right. And so I don't know the answer to that question. But I do know that it's having awareness of it is important and trying to be intentional. But I never want to make people feel uncomfortable. So we don't always talk about it. But people tend to ask so often, I'm not the one that brings it up, you know, people will ask, and I love that people are thinking about it and they want to make a healthy, you know, decision to improve their sleep.

Anita Rao
Like I said, I never take a good night's sleep for granted.

My thanks to Kaia Findlay, Laura Pellicer and Charlie Shelton-Ormond for producing this episode. The show is sponsored by Weaver Street Market, a worker and consumer owned cooperative selling organic and local food at four triangle locations in North Carolina. Now featuring online shopping with next day pickup, weaverstreetmarket.coop.

Embodied is a production of North Carolina Public Radio WUNC a listener supported station. If you want to lend your support to this podcast and WUNC other shows on demand. Consider a contribution at wunc.org. Incredible storytelling like you hear on Embodied is only possible because of listeners like you.

Lindsey Foster-Thomas is WUNC's director of content. Jenni Lawson is our sound engineer. And your head is bobbing right now because of Quilla who wrote our theme music.

I am Anita Rao, on an exploration of our brains, our bodies and taking on the taboo with you.

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