SCOTT DETROW, HOST:
Imagine a house in which every room, doorway and hallway were designed by a different architect. Doorways aren't connected. Staircases lead to nowhere. Rooms are cut off from each other. For many, this is how the American mental health system feels. Each part of the system - emergency rooms, psychiatric facilities, jails, homeless shelters - is only able to address one small part, one underlying cause of a complex crisis, and patients often end up bouncing from one room to the other.
In Lost Patients, a new podcast from The Seattle Times and KUOW, reporter Will James set out to understand how we ended up with this system. He starts by examining what it's like to live with a serious mental illness and go through psychosis. And a warning - the story briefly mentions thoughts of self-harm.
UNIDENTIFIED PERSON #1: When you're dreaming, you know, you'll see things that are fantastical. When you wake up from a dream, you realize, oh, that wasn't real. But when you're in a dream, it's totally real. You have no idea that it's not actually your life.
WILL JAMES, BYLINE: When I've had chances to ask people what psychosis is like, more than one has answered like this - that it's kind of like a dream.
UNIDENTIFIED PERSON #1: You wake up, and you forget a lot of the details. And you might have some hazy pieces to put together.
JAMES: Psychosis is what we call it when someone loses touch with reality, usually because of a serious mental illness like schizophrenia. What I've learned is that psychosis can be wonderful in the ways dreams are wonderful.
UNIDENTIFIED PERSON #1: I thought I controlled the weather. And I would stand outside in the rain, just like the guy in "Shawshank Redemption," like, ah.
JAMES: And psychosis can be terrifying in the ways dreams are terrifying.
UNIDENTIFIED PERSON #2: I would be looking at somebody, and I'd see their face. And I'd turn around, and it wasn't that same person. It was like they had a different face.
UNIDENTIFIED PERSON #3: I had an episode thinking I was going to be poisoned, and I wouldn't eat or drink.
UNIDENTIFIED PERSON #2: I think that these people are chasing me. And I'm hiding. And I'm crying. It was like living a total nightmare, like a sci-fi nightmare.
JAMES: There's a reason I've tracked down people who can explain what psychosis feels like on the inside. It's because, like a lot of us living in a city in the U.S. today, I see psychosis all the time from the outside. And to us on the outside, psychosis often looks like this.
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UNIDENTIFIED DISPATCHER #1: Possible person in crisis in front of the hospital.
UNIDENTIFIED DISPATCHER #2: Location having suicidal ideations and refusing to be taken in for an evaluation.
UNIDENTIFIED DISPATCHER #3: Female, traffic, screaming at...
JAMES: Police officers in my city, Seattle, responded to almost 10,000 scenes like this last year, scenes of people who seem to be having a crisis. Mental illness can cause a bunch of different symptoms, and psychosis is only one of them. But psychosis is often what's happening when we see someone in these moments of crisis, their inner dream spilling into the outside world.
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UNIDENTIFIED PERSON #5: I want to talk to you about a crisis we see all around...
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UNIDENTIFIED PERSON #6: I think this decade will be known as the decade of the behavioral health crisis.
JAMES: All around the U.S. right now, mayors, governors, lawmakers are scrambling to add hospital beds and pass laws making it easier to institutionalize people, reviving debates older than this country about when and how we should intervene when someone's so sick they don't know they're sick.
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UNIDENTIFIED PERSON #5: Untreated psychosis can be a cruel and all-consuming condition that often requires involuntary intervention.
JAMES: This story is about what happens when two things meet - serious mental illness and the infrastructure we've built to respond to it. But to understand the second half of that equation, what we've built and where it goes wrong, you've got to understand the illness.
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JAMES: When someone's brain gets sick or injured, the boundary between what's real and what's not can get blurry. Doctors call this blurry state psychosis. All sorts of things can cause it - a stroke, a head injury, a high fever or a reaction to a medication. But most of the time, it's a serious mental illness, like schizophrenia or severe bipolar disorder. There's currently no blood test for psychosis, so to diagnose it, doctors look for a few telltale signs - disorganization, hallucination and delusion, all of which we'll get into. It's worth saying, though, plenty of people who experience psychosis come out of it and have careers, relationships, families. These are the people we've turned to as guides. For a lot of them, psychosis started out slow and insidious.
CAROLINE PANZOA: I went from being a really prolific artist and playing guitar all the time to literally just sitting on the couch for hours.
JAMES: Caroline Panzoa's (ph) first full-blown psychotic episode started when she was in college in Wyoming. She stopped going to class, stopped socializing, lost interest in her hobbies. She'd later learned that the first phase of psychosis can look a lot like depression.
PANZOA: There could be this disconnect from reality where even though I was present in reality and I knew what was real, I had sort of like a filter between me and the world where it was almost like looking through a film.
JAMES: Caroline left college and moved into an apartment close to her mom here in Washington state. And it was here that this feeling of disconnection grew fully into psychosis, a rupture with reality. It was the first of several episodes Caroline would experience. Caroline says when her psychosis is ramping up, she or the people around her can sometimes notice her thinking change. She says her thoughts leap from one idea to the next, making abstract connections to other people can't follow, finding meaning and symbols in things other people don't. Here's an example of what her thoughts were like during one of her stays at a psychiatric hospital.
PANZOA: Oh, that guy's playing basketball. OK. So he's in charge of the sun because the basketball is the sun. And I'm in charge of the moon. So I'm just going to flicker this light on and off, and that'll change from day to night. My mind is working really fast and piecing together these symbols and making sense of them in its own strange way. And, you know, I thought I was changing day and night rapidly. And someone said, you have to stop doing that. People are trying to sleep.
JAMES: This is one common sign of psychosis - disorganization. To us on the outside, it can look like someone talking fast, getting lost in tangents or even just stringing seemingly random words together. A second sign of psychosis is hallucination - hearing or seeing things that aren't real. Back in 1989, Lou Middleton (ph) was in his 30s, working at a warehouse and living in a basement apartment in the heart of Seattle. Lou was listening to a lot of '80s metal and dance music at the time and played albums through speakers in his apartment. But one day he noticed what sounded like voices mumbling in the background.
LOU MIDDLETON: I would turn on a song and a person would say, oh, gosh, I know he was going to play that song. I hate that song. And I'm thinking, you know, I don't even have it that loud, you know. And I'm, like, turning it down. And then it plays. I knew he was going to play that song again. I liked Annie Lennox a lot. And I would be listening to the Eurythmics.
And then suddenly right in the middle of the song, I would hear like, you know, hi. This is Annie Lennox. You know, and we have this special code, and we're trying to send this out to people like you that your voice is (inaudible). If you're hearing my voice, that means you're part of this movement that knows that there's something going on and that there's some changes that are going to take place. So be very careful. You'll get more information along the way. And then it would go away. And then I would put on another album and then that singer would say the same thing. And I'm going, like, how am I getting this? How is this happening?
JAMES: I want to say here, Lou wasn't hearing these voices in his head, like his internal monologue. To Lou, the voices were coming in through his ears from outside of him. And as Lou got more stressed, he says the voices came to him not just in music, but in any kind of constant or rhythmic noise, buzzes or hums of appliances or machinery. They'd say they were after him. He started to believe them.
MIDDLETON: I was just completely consumed. Every moment, everything I was doing was because of the voices.
JAMES: The idea that people were chasing Lou became his reality. He ended up fleeing into the woods and living out there for a while. After disorganization and hallucination, this is a third sign of psychosis - delusion, believing things that aren't real. What's important to understand about psychosis is a particular reason it's unlike any other medical condition. It's that psychosis can feel so real, so all-encompassing, that the person experiencing it doesn't believe they're ill. There's a word for this, anosognosia. It comes from ancient Greek - disease without knowledge. The part of you that's supposed to recognize you're sick, the brain, is the part that is sick. Anosognosia is what makes psychosis not just a private medical problem but also a social puzzle. It forces the rest of us to decide, at what point do we step in?
Everyone I've talked to who's been through psychosis had a moment when their dreams spilled out of their private world and into the real one. They ran through town naked or walked fully clothed into a lake. They told police that their workplace was about to be bombed or that they just murdered their husband, when, in fact, their husband was actually fine. A person's entire life can depend on how the world reacts in these moments. A police officer sees you as someone who needs help or someone who's a threat. They decide to book you in jail or take you to an emergency room. The psychiatric hospital happens to have a bed for you that day or it doesn't. If you're lucky, this can go right or it can show just how wrong things can go.
DETROW: Will James is the host of the podcast Lost Patients from The Seattle Times and KUOW public radio in Seattle. If you or someone you know is in crisis, call or text the 888 Suicide & Crisis Lifeline. Transcript provided by NPR, Copyright NPR.
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