Disease Without Knowledge

Summary

Lost Patients: Episode 6 - Disease Without Knowledge

Host: Will James
Production: KUOW News and Information, Seattle Times
Release Date: April 23, 2024

Introduction

"Disease Without Knowledge" delves into the intricate and often fragmented landscape of mental healthcare in America, tracing its historical roots and examining contemporary challenges through personal narratives. This episode highlights the systemic issues that perpetuate the cycle of homelessness, incarceration, and inadequate medical care for individuals with severe mental illnesses.

Historical Context: Edward Moore's Story

The episode opens on a grim winter day in 1854, introducing Edward Moore, Seattle's first documented homeless individual suffering from severe mental illness.

• Discovery and Initial Care:
  [00:00 - 00:34] Will James recounts the discovery of Edward Moore, a 32-year-old sailor from Massachusetts, living in a makeshift tent in early Seattle. Josephine Ensign, a University of Washington nursing professor, provides historical insights, detailing Moore’s survival through foraging shellfish and the compassionate care he received from the Coast Salish people.

• Medical Intervention and Displacement:
  [00:55 - 01:43] Moore's severe frostbite necessitated the amputation of his toes by Seattle’s only doctor, highlighting the primitive medical practices of the nascent town. His case posed a critical question for Seattle’s leaders: "Who’s responsible for taking care of someone whose mental illness gets in the way of them caring for themselves?"

• Systemic Neglect:
  [02:08 - 03:56] Edward was eventually sent to Steilacoom, home to what would become Western State Hospital. However, due to legislative reluctance to fund his care, Moore was rudely deported back to Massachusetts, where he died by suicide—"cause insanity"—illustrating the longstanding systemic failures in mental healthcare.

Parallels Between Past and Present: Josephine Ensign’s Insights

Josephine Ensign draws parallels between Moore’s plight and today’s mental health crisis.

• Stigma and Social Exclusion:
  [04:16 - 04:26] Ensign emphasizes that "stigma, social exclusion" are deeply ingrained in American culture, mirroring historical attitudes that have perpetuated the marginalization of individuals with mental illness.

• Systemic Reflexes:
  [04:26 - 04:47] The collective societal response often involves "push away, to cast out, to make it somebody else's problem," trapping individuals in a relentless cycle of emergency interventions without sustainable support.

Personal Stories of Recovery: Lou Middleton

Lou Middleton’s journey offers a poignant look into the struggles and triumphs of living with psychosis.

Lou's Struggle with Voices

• Onset of Symptoms:
  [05:38 - 06:19] Lou recounts how auditory hallucinations began amid the music he listened to in the late 1980s, leading him to flee into the woods to escape the voices that "criticized him".

The Turning Point and Hospitalization

• Emergency Intervention:
  [06:31 - 09:21] A bite wound from a fight and an encounter with an ex-girlfriend prompted Lou’s hospitalization at Harborview Medical Center. He describes his initial resistance to antipsychotic medication, likening it to "Invasion of the Body Snatchers" and fearing the meds were "poison." However, he acknowledges that the medication "helped to calm the voices," albeit with significant side effects like tardive dyskinesia.

Recovery Journey and Insights

• Stable Housing and Support:
  [10:49 - 11:49] Placement in a federally funded housing program was pivotal. Alix Van Hollebeck, the head of nursing at Seattle's Downtown Emergency Service Center (DESC), underscores the importance of stable housing: "escaping the deprivations of homelessness... can go a long way toward getting someone to recovery."

• Ongoing Challenges:
  [12:13 - 13:14] Despite progress, Lou continues to experience voices, demonstrating that recovery often means managing symptoms rather than complete eradication.

• Empowerment and Community:
  [15:31 - 20:17] Lou transforms his experience by engaging with the Hearing Voices Network and eventually becomes a certified peer counselor. He emphasizes the need to "learn how to listen to yourself" and integrate his experiences into helping others.

Carolyn Ponzoa’s Experience

Carolyn Ponzoa's narrative illuminates the intersection of psychosis and substance abuse.

• Descent into Psychosis:
  [21:13 - 24:22] Carolyn describes her journey through schizoaffective disorder and drug use, where repeated hallucinogen use exacerbated her psychosis. Her delusions led her to marry a stranger, believing he could protect her from demons.

• Hospitalization and Insight:
  [22:52 - 25:23] Involuntary hospitalization was a turning point, providing her the necessary medication and support to gain clarity. However, she critiques the system for its "forced hospitalization, forced medication," which can "deepen trauma, distrust, and alienation."

• Advocacy and Vision for Care:
  [29:26 - 33:35] Through creating a TikTok account, "psychotic in Seattle," Carolyn fosters community and advocacy, highlighting the importance of "structure and routine" as well as "connection with other people." She envisions an integrated system where support is continuous and community-based.

Donald’s Story: Caring for His Son Eli

Donald’s experience explores familial caregiving within the flawed mental health system.

• Crisis Intervention:
  [34:37 - 35:53] Faced with his son Eli's recurring crises, Donald and his wife chose to provide 24-hour care at home, recognizing that traditional short-term hospitalizations were insufficient and potentially harmful.

• Constructing a Supportive Environment:
  [35:27 - 43:36] They developed a meticulously structured daily routine to support Eli, emphasizing understanding triggers and modifying their own behaviors to prevent exacerbating his psychosis. Donald adopts the perspective of being a "vector" for Eli's condition, taking responsibility for mitigating external stressors.

• Systemic Critique:
  [39:09 - 41:38] Donald criticizes the psychiatric system for prioritizing convenience over patient-centered care. He highlights how chaotic emergency rooms and inadequate discharge planning perpetuate Eli’s instability, emphasizing the need for "steady long term care that comes to the patient."

Systemic Challenges and Proposed Solutions

The episode identifies key flaws in the current mental health system and explores potential remedies.

• Involuntary Commitment Issues:
  [25:23 - 26:05] Experts like Catherine Jonas and Dwayne Stone discuss the limitations of involuntary commitments, arguing that without comprehensive follow-up care, such interventions add to the churn rather than providing lasting solutions.

• Need for Long-Term Support:
  [26:07 - 27:37] The conversation underscores the absence of a robust long-term support infrastructure, advocating for models like Assertive Community Treatment (ACT) and Permanent Supportive Housing. However, these models are hampered by high costs and insufficient staffing.

• Integrated Community Care:
  [32:19 - 33:35] Carolyn emphasizes the necessity of integrated, community-based support systems that allow individuals to maintain autonomy while receiving the care they need. This includes "people checking in on you, helping with medication, guiding you," thereby preventing isolation and promoting sustained recovery.

Conclusion: Vision for Recovery and System Reform

"Disease Without Knowledge" culminates in a call for a transformative approach to mental healthcare. The episode advocates for:

• Enhanced Insight and Compassion:
  Recognizing mental illness as a societal issue that requires empathy and integrated care rather than exclusion and punishment.

• Community-Centric Models:
  Building systems that "bring a team of mental health care professionals... to you," ensuring continuous and personalized support.

• Empowering Individuals:
  Facilitating recovery as a daily practice of managing symptoms and fostering meaningful connections, as exemplified by the stories of Lou, Carolyn, and Eli.

Notable Quotes:

• Josephine Ensign:
  "Most likely had PTSD from a really, really bad shipwreck and maybe also potentially some traumas from his childhood back in Massachusetts... he had schizophrenia or some type of psychosis."
  [01:29]

• Lou Middleton:
  "I was running from nothing... putting myself in danger."
  [05:38]

• Alix Van Hollebeck:
  "Escaping the deprivations of homelessness, the elements, the hunger... can go a long way toward getting someone to recovery."
  [11:49]

• Carolyn Ponzoa:
  "I wish there were some sort of a way people could have programs or housing without having to take that choice away from them."
  [24:22]

• Donald:
  "We have no model in our country of long term support for people who may actually want it and may actually benefit from it in the long term."
  [26:22]

Final Thoughts

"Disease Without Knowledge" portrays the enduring struggle within American mental healthcare, emphasizing the urgent need for systemic reform. Through historical reflection and heartfelt personal stories, the episode advocates for a compassionate, integrated approach that prioritizes long-term support and empowers individuals to navigate their recovery journeys.

Transcript

[Will James]

Lost Patience is about serious mental illness. This episode mentions suicide and drug use, so it might be disturbing for some listeners. On a wet winter day in 1854, pioneers on the shore of what was not yet Washington State found a man shivering in a ragged tent.

[Josephine Ensign]

The tent dweller was Edward Moore, a 32 year old sailor from Worcester County, Massachusetts, who had stayed behind in Seattle or was left behind by a ship's captain.

[Will James]

Josephine Ensign, a University of Washington nursing professor, has researched the history of homelessness in the Seattle area. This is from her book, Skid Road.

[Josephine Ensign]

He'd been living in his makeshift tent for months, living off raw shellfish he foraged and being cared for after a fashion, by the Coast Salish people who lived nearby.

[Will James]

This sailor, Edward Moore, had landed in a Seattle that was barely two years old, a misty settlement of log cabins and wood framed houses at the edge of the known world. He had frostbite, so the town's only doctor amputated many of his toes with an axe.

[Josephine Ensign]

This was, after all, a frontier logging town where medical care was scarce and sharp axes were plentiful.

[Will James]

Edward was Seattle's first, first recorded homeless person, and according to accounts from the time he was seriously mentally ill, he.

[Josephine Ensign]

Most likely had PTSD from a really, really bad shipwreck and maybe also potentially some traumas from his childhood back in Massachusetts. But it does seem like he had schizophrenia or some type of psychosis.

[Will James]

Edwards arrival forced this brand new community to consider a question. Who's responsible for taking care of someone whose mental illness gets in the way of them caring for themselves?

[Josephine Ensign]

What became of Moore? How the residents and leaders of the nascent town of Seattle dealt with him and the poignant story of his final days echo lessons and dilemmas that are with us still.

[Will James]

Seattle's leaders first sent Edward to a town 50 miles away, Stillacum, where a doctor would care for him. This town had a Fort Fort Steilacoom that would later become Western State Hospital, the same psychiatric hospital that would house Adam Urant more than a century and a half later. The story we heard in the previous episode, when the bill came due for Edwards care, Washington's territorial legislature did not want to pay it. Lawmakers thought paying this bill would set a precedent, that they would be responsible for caring for the growing number of poor, poor and ill sailors ending up in the territory. They decided it should be the county's responsibility. When Edward's doctor in Steilacoom found out lawmakers would not cover the cost, he sent Edward on the same journey Adam would take in a Later century. While Adam was sent from Western State Hospital to Seattle in a taxi, Edward was put in a canoe, paddled back to Seattle, and left there. Seattle's first documented homeless person, also the first recorded person to get tossed into the churn, the cycle that today traps people in a loop of emergency rooms, jails, and homelessness. Eventually, Seattle's leaders shipped Edward back to his family in Massachusetts.

[Josephine Ensign]

Townspeople took a collection to buy him a new pair of clothes, paid a ship's captain and shipped him off. He made it back to his hometown, then of Ashburnham in Worcester county, was living with his elderly parents and his sister, and the cause of death was hanging. And it says cause insanity.

[Will James]

Josephine, in addition to writing books, is also a nurse who has specialized for decades in treating people who are homeless and sometimes seriously mentally ill. And she sees lots of parallels between Edward's story before the Civil War and the lives of her patients today. But one parallel stands out.

[Josephine Ensign]

I'd say stigma, social exclusion. I mean, this happens across the world, right? But it is especially ingrained in our culture.

[Will James]

One of the links across time is us, how we collectively react to serious mental illness. Our reflex to push away, to cast out, to make it somebody else's problem. It's helped create a world where the people who do find recovery often have to improvise it for themselves.

[Lou Middleton]

I call them like window periods, where suddenly there's sensibility there.

[Carolyn Ponzoa]

I remember the moment that I told myself I would dedicate my life to my mental health, and I really meant it.

[Alix Van Hollebeck]

Recovery may mean needing somebody to watch out for you for the rest of your life.

[Will James]

I'm Will James from KUOW and the Seattle Times. This is the final episode of Lost Patients, three stories of people escaping a churn that's generations old. These stories reveal not only what recovery from serious mental illness can look like and the changes that can make that more possible, but also the ways we get in the way. Episode six, Disease Without Knowledge.

[Lou Middleton]

I was running from nothing. I'd hear, like, he's over that way. Let's go follow him. And I keep running deeper into the woods, and I'm putting myself in danger.

[Will James]

For Lew Middleton, the voices started in the background of music he was listening to in his Seattle apartment at the end of the 1980s. We heard about Lou's voices early in our series, how they criticized him.

[Lou Middleton]

I would turn on a song and a person would say, oh, gosh, I knew he was going to play that song. I hate that song.

[Will James]

Eventually, the voices drove Lou into the woods of Washington State, where he Lived for a while, fleeing them as they reinforced his delusions.

[Lou Middleton]

What I noticed was the more I collectively listened to him and the more I thought about maybe people chasing me, the more it became people chasing me.

[Will James]

In each story of recovery we're going to hear, there's a moment that shocks someone out of the loop. They're stuck in a moment. They can step outside their illness and start to see it for what it is. For Lou, it started with a bite wound. He says at some point while he was homeless, he got in a fight. He doesn't remember the details, but somebody bit his arm. And that night, he happened to see an ex girlfriend, someone he had kept in touch with over the years, someone who still looked out for him, tethered him to the mainstream world.

[Lou Middleton]

When it comes to friends, that term is used rather loosely. We have more associates than we have friends. Your friends are someone that really help and direct you, and in a way. And they're tireless. They'll do their best. She's the one that got me to go to the hospital.

[Will James]

This ex girlfriend convinced Lou to get the bite wound checked out, and then she convinced him to stay for a psychiatric evaluation.

[Lou Middleton]

They asked me these questions, and I shared these things about that were going on. I can't remember exactly. It was. They were just very delusional answers. And when they came back for the assessment, it was like, literally telling me I was crazy. I was like, wait a minute, you know? How do you know? You weren't there, and you're trying to tell me that this is going on. So I found myself strapped on a bed going up to Harborview 5, I think it is.

[Will James]

He's talking about Harborview Medical center, one of the only hospitals in the Seattle area with a specific unit for psychiatric emergencies. Liu says he thought he was living through Invasion of the Body Snatchers and that the antipsychotic medication they were offering him was poison. But Lou says even in the middle of his delusions, he would have what he calls window periods. We need to have more clarity. Lou says one of these windows happened to open while he was in the hospital, where he was diagnosed with bipolar disorder with auditory hallucinations, and he agreed to take the meds.

[Lou Middleton]

It started, like, helping to calm the voices. Didn't go away completely. It just kind of brought it down to the point of where they weren't so loud.

[Will James]

The antipsychotic drug Lou was getting, it still worked the same way as the original antipsychotics that came out in the 1950s, almost 40 years earlier. @ that point to this day. Researchers have made basically no game changing breakthroughs in antipsychotic drugs since they first emerged. So they remain flawed and risky tools.

[Dwayne Stone]

First of all, these medications are not, they're not cures and they're not going to fix people.

[Will James]

Alix Van Hallebeck is the head of nursing at Seattle's Downtown Emergency Service Center, a nonprofit right near Harborview Medical center that provides shelter, housing and medical care to lots of people with complex cases of mental illness and substance use. Alixa spent a lot of her nursing career trying to get some of the most seriously mentally ill people in Seattle to a place of recovery. And that often means using antipsychotic medication. But because of the risks of serious side effects, she deploys them carefully.

[Dwayne Stone]

Oftentimes they harm people. They cause a lot more metabolic disorders, they make people sicker. So some people really need them to function safely in their world. And when I'm giving an injection to a client, I always say, how are you feeling now? And how does the injection make you feel? And if they're kind of resistant to receiving their medication, I'll say, well, maybe this will help your thinking a little bit. You know, I work with some doctors here who really work towards deprescribing because people come out of the hospital with tons of medications over prescribed radio, really just kind of shells of people when they come out. And we want to get to a point where they get to live their life, even if it's weird and different and we don't understand what it's like, but they get to live their life as they want to live it, with maybe a little bit more sparkle than the rest of us.

[Will James]

Lou says his medication eventually gave him tardive dyskinesia, a possible side effect of antipsychotic meds that causes facial tics and other involuntary movements. And he had to stop taking it. Other meds actually seemed to make the voices louder. Eventually, Lou got off medication entirely. But for a while, at least early on, the medication opened up some space for Lou, gave him a reprieve from the voices, even if it didn't squelch them entirely. He was placed in a federally funded housing program at the hospital, and from there he was able to move into his own apartment. To Alix the nursing supervisor. This development may have been just as important, if not more than the medication. She says escaping the deprivations of homelessness, the elements, the hunger, the constant gaze of other people can go a long way toward getting someone to recovery.

[Dwayne Stone]

We get people into housing and we find that they don't even need the medication because they can just be themselves. They don't have to fight who they are in our settings.

[Will James]

Lou's life had changed radically within a couple years. He went from homeless in the woods to having an apartment and a car. He was on his way to recovery, but the voices were not done with him.

[Lou Middleton]

I was hearing somebody, you know, Lou, Lou, you know, help me, help me, please. These people are trying to kidnap me. And I said, well, who are you? And he said, well, I just heard about you and there's this channel that we can communicate with each other on. Please come and help me. I said, well, how do you look? He says, you'll see me. Please hurry. Don't ask all these questions. I got brown hair, okay? I go, yeah, but where are you going to be? He goes, hurry, will you?

[Will James]

The voices sent Lou on a rescue mission to the Paramount Theater in downtown Seattle. And then when he got there and didn't find anyone, they sent him to the Space needle, about a 10 minute drive away.

[Lou Middleton]

So I'm driving over there looking around at the Space Needle, trying to find anything suspicious. They took me up to Capitol Hill. I'm up on Capitol Hill and meanwhile I'm looking at my gas tank and it's like running low on gas, and I'm thinking, like, wait a minute here. Why is it that you know where you're at?

[Will James]

For years at that point, the voices had ruled Lou's life. Whatever they told him became his reality. But this time he had questions, and the voices did not like that.

[Lou Middleton]

It's just like the first thing he says, you goddamn son of a bitch, I'm going to kill you. And I said, well, how can you kill me if you're being kidnapped? I mean, this doesn't make sense. He says, I'm going to kill you. And I said, fine.

[Will James]

Lou says he went home and waited with a baseball bat for someone to try to kill him.

[Lou Middleton]

I left my back door wide open and I said, come on, I'm tired of you threatening that you're going to kill me. And since you have so many people with you, I'm here. Come so here. About a couple hours passed and I said, well, where are you? Well, we have something to do, but we will be there soon. I said, you know, why am I going to leave my door open to some guy, some idiot that's busy doing things? And then the next morning you're not going to be here, but I'm going to continue leaving my door open waiting for you to be killed. I said, that sounds real stupid. And then it just stopped. It stopped. There was no threats. There was no nothing. It was just like the reason just completely stopped what was going on? And I thought, wow, you know something? There's something to what's going on here. I said, how much is it? Is it me?

[Will James]

Anosognosia is the scientific term for being so sick you don't know you're sick. From ancient Greek, it roughly translates to disease without knowledge. And in psychiatry, the opposite of anosognosia is insight, the realization that these experiences are coming from inside you. For Liu, it took a connection with a friend, his ex girlfriend, who was there at the right moment. And then hospitalization, medication, housing. All of this created the conditions for Lou to come to this realization, for himself to see his situation clearly.

[Lou Middleton]

It's almost like I was playing this role, like, almost like a movie, a role where I was believing everything that was going on. And as soon as I tested it, the reality came through that there was nobody out there chasing me.

[Will James]

From there, Lou was able to build on that insight. Lou has an autoimmune disease and learned that eating certain foods could cause it to flare up, and that would make the voices louder and meaner. He started paying a lot of attention to his diet and found the voices were like a meter telling him how well he was taking care of himself. He learned the voices reflected his own feelings. If the voices were cruel, it meant that somewhere inside, Lou was being cruel to himself. And so the voices taught him to be gentler with himself. At one point, Liu came across the Hearing Voices Network, a community of people who hear voices and support each other. Lou learned he wasn't the only one. And then he wanted to make sure no one else like him ever went through what he did. Running from the voices alone, he got a job with the Downtown Emergency Service center, the same organization where Elix, the nursing supervisor, works in Seattle. Lou was there for 25 years, becoming the longest serving certified peer counselor in Washington state history. He spent years leading support groups for people, many of them homeless. D this is Lou.

[Lou Middleton]

Hello. Hi.

[Dwayne Stone]

Nice to meet you.

[Will James]

On this day, lou is visiting DESC's Lou Middleton drop In center for the first time since he retired a few years ago. He's moved to Panama, where he was born and where he says the voices are quieter than here in the US and they speak Spanish. How does it feel to be here?

[Lou Middleton]

Yeah, well, colors made a big difference. I remember that we were talking about adding colors to kind of brighten up. This used to be my Little office.

[Will James]

This was your office right here.

[Lou Middleton]

I think one of the fun things was music. Playing music in here. They love music.

[Will James]

Lou would lead his support groups in a back room of this center. People would share stories with Lou and with each other about their voices.

[Lou Middleton]

Because of me being a peer and having those live experiences, it was difficult sometimes for Seth to come in and hear how open some of these stories really were. Because the. This is something they weren't telling staff. It was something they. Well, we could tell Lou. Then the topic would be like, well, now that you know that you hear voices, how many of you like your voices? Then it would be, how many voices do you hear? Who do you believe are those voices? Where do you feel they're coming from?

[Will James]

It was a gradual process of getting people to see these voices not as outside entities, but as parts of themselves, parts they had some power over.

[Lou Middleton]

I would try to be very positive with my voice and say, okay, look, you know what? You've done that before, and I'm not gonna get bothered by it. I understand you're having a difficult time right now, and I need to listen to what you're saying. And I'd hear this. Thank you. Wow, you've changed that kind of thing. So I have a nice relationship with my voices. Time is needed to really sit down and put this together. This is my experience. Others have their own experiences that they're dealing with their own life. But there is a path that they can walk along. But the biggest part of it is being able to learn how to listen to yourself.

[Will James]

For Lou, and for lots of people with serious mental illness, recovery does not mean the symptoms are gone. It means coming to a kind of peace with them, carving out a place in our society where those symptoms are accepted, where they might even be of.

[Dwayne Stone]

Use in other parts of the world. The people with mental illness are the shamans, right? They're people who know things, they're wise. And we've said that these people don't know things. They're broken, they're bad, and they can't fit in society. So I think really just accepting that there's almost something beautiful in the way all of our different brains work.

[Will James]

If you don't mind me asking, are you hearing voices now as we sit together in this room, or are they quiet right now?

[Lou Middleton]

Sometimes they're talking, but most of the time, they're kind of subdued. They're quiet. And I just kind of hear, like, in the background them saying, loo, loo, loo. Like that. So it's interesting. I feel that they develop this fear that I'm separating from them and they start calling out my name and it's like, hey, you're in the same place in the brain. I said, you haven't moved anywhere. They're not perfect, we're not perfect. And if we're going to learn how to work with our voices, we have to realize they're imperfect. And then we have to realize what we're doing to our own self.

[Carolyn Ponzoa]

I was on this big adventure where I could control weather and I was secretly a God. I was in mighty power from all of these huge delusions. And so I just went from one place to the next.

[Will James]

Carolyn Ponzoa was the first voice in our series telling us that psychosis can feel like a dream. A few years ago, she was lost in that dream. She left a sober living home, was evicted from a house she was sharing with friends, living out of a backpack and going in and out of psychosis due to her schizoaffective disorder and drug use.

[Carolyn Ponzoa]

My favorites were hallucinogens. And strangely, that was kind of because it reminded me of being psychotic, but like in a controlled setting where I was familiar with the environment. But then the more I would use, I'd get high, come out of the high, get high, come out of the high, get high, and then just stay psychotic for a year. So there'd be this seamless integration from being high into never coming out of it and just escalating into psychosis.

[Will James]

At one point, while Carolyn was in and out of psychosis and couch surfing, she found herself married to a man she was crashing with after knowing him for just a couple of weeks. At that time, she says she thought she was marrying a God who could protect her from demons.

[Carolyn Ponzoa]

I didn't see anything at all wrong with it. I just figured as long as I had my drugs, I was okay. I had no idea I was psychotic. So it didn't hit me the gravity of what had happened.

[Will James]

For months, Carolyn's psychosis deepened and her delusions grew darker.

[Carolyn Ponzoa]

The things I saw were horrific and it was so much more realistic and things were so much more detailed. I was like completely lost. I came into our bedroom one night and he was sleeping and he to me, looked like he had died. And I thought I was the one that it was killed him. So I freaked out. I thought I was a murderer and I ran away from home and I wandered around until I found a man with a pickup truck. I don't know what I told him, but for some reason he took me to a 711 and left me there. And then I wandered around some more until I found a cop and I told her that I had killed my husband. And thankfully, instead of taking me to the police department, she actually took me to the hospital, you know, and that's where they put me on medication. And when I came out of the episode, I realized, oh my God, I'm married. And then I left him because that was like the worst thing I've ever done.

[Will James]

For Carolyn, like with Lou, this hospitalization helped create the conditions for insight. But even so, to Carolyn and others who have gone through involuntary commitment, this is another flawed and risky tool of psychiatry. The risk is that the experience of being strapped to a gurney, often taken to a chaotic emergency room, and then powerless in a psychiatric hospital can deepen trauma, distrust, and alienation.

[Carolyn Ponzoa]

I know many people who have been involuntarily hospitalized, myself included, who have not been treated well. I myself know that the only way I could get well is if I was hospitalized in some fashion. So the involuntary hospitalization has worked for me, but it's different for everyone. I do wish there were other resources aside from just the forced hospitalization, forced medication. I wish there were some sort of way people could have programs or housing without having to take that choice away from them. Because I've been to places where it's kind of just like being in a holding cell and they don't have groups or art or anything. And it's really depressing because all you do is see your psychiatrist once every couple of days, then sit around that didn't really do anything. Because I think a lot of times people see hospitalizations as like a way to get medicated and not so much a way to get well.

[Catherine Jonas]

If we are willing to commit people involuntarily, where are they going to go?

[Will James]

Dwayne Stone is a therapist in Seattle, one of the few private therapists anywhere who treats people in psychosis. He makes the point that involuntary commitment without high quality follow up care risks becoming just another stop in the churn.

[Catherine Jonas]

If somebody is involuntarily committed, they're going to stay for a month or two. Although that's, I guess, a little better. What I hear, it's just more stress or transition or inconsistency for the client. So although at face value it seems this great, let's put them in the hospital for this short term. It may make them safe for the weekend, but the net effect isn't. It's not very positive.

[Will James]

So much of the politics around serious mental illness right now revolve around when and how we should treat people against their will. But to Carolyn and others who have been through this process, what matters more is figuring out what comes before and after hospitalization.

[Donald]

We seem to have no model in our country of long term support for people who may actually want it and may actually benefit from it in the long term.

[Will James]

Catherine Jonas researches psychosis at Stony Brook University in New York. What she's pointing to has emerged as a pattern in our reporting. When we ask what is missing, whether it's someone who experiences psychosis, their family members, mental health care providers or scientists, the most common answer is some version of steady long term care that comes to the patient rather than requiring the patient to go to it.

[Donald]

We have sort of the crisis management of the inpatient unit and then the outpatient treatment, which assumes that you can manage all areas of your life. You can get yourself to an outpatient clinic, you can fill the prescription, remember to take them, and then there's nothing in between. There's absolutely nothing in between.

[Catherine Jonas]

What we need to have the ideal circumstance is the person has an apartment and they don't have to worry about how to pay for it, and the social worker and the therapist and the doctor actually visits them if they need to again.

[Will James]

DWAYNE Stone Seattle THERAPIST We've got to.

[Catherine Jonas]

Work with people on that level because if somebody's disorganized and they're afraid and they're paranoid and they don't have any money and they're not going to make it to the clinics, so the system fails because you and I can go to our doctor's appointment, manage our life around whatever we're doing, but somebody who's disorganized because of psychosis isn't going to do it. And so they're just not going to participate in this clinic based system.

[Will James]

If you wander the maze that is our current mental health care system, you can find models of what this sort of care might look like. You've got assertive community treatment or ACT programs which bring a team of mental health care professionals and addiction specialists to you, whether you're living in your own place or with family or on the streets. Then you've got permanent supportive housing where you get your own apartment, plus 24,7 help with mental health care, addiction treatment, and the basics of daily living, like keeping your place clean. These models cost a lot of money and require a lot of staff. The numbers of ACT programs and permanent supportive housing units we currently have do not come close to meeting the demand. And in practice, the programs that do exist Sometimes lack the funding and staff to live up to what they promise. But if our current approach to mental health care is like a disjointed house, where a different architect has designed each room, Then programs like these might provide the framing, the basic shape of a new house. Carolyn, in lieu of this sort of long term care, had to cobble together a version of it for herself.

[Carolyn Ponzoa]

Structure and routine are huge for me, and I absolutely need that because without those two things, I fall apart very quickly. So I take my medication in the morning and I go to 12 step meetings every day. We have a recovery cafe in my town that is for people with mental health and addiction. So I kind of go there to support both of those needs and I volunteer there. And having some responsibility in the community.

[Will James]

Helps a lot for Carolyn. It helps her to think of her recovery from mental illness like her recovery from addiction. Not a magical place she's arrived at, But a daily practice she'll maintain for life. But it's not just the routine. It's that other ingredient, connection with other people, that's also important. One reason why is that now she and those around her have learned to spot when she might be slipping into psychosis.

[Carolyn Ponzoa]

Now that I've educated myself and I've learned my triggers and my warning signs, and I have people in my life who recognize it too, It's a lot easier. That's why the last episode was so mild, Was because I could recognize that I was having the psychotic thinking. And also my partner knew a lot about it from me, telling him about my past episodes. So when I started acting differently, he definitely noticed. And between the two of us, we were able to figure it out and get to the hospital before it was a total problem for me.

[Will James]

Carolyn made an account on TikTok last year called psychotic in Seattle. It became a way to maintain connection with the world, to make psychosis easier for everyone to talk about, and to help family members of people in psychosis understand what their loved ones are experiencing.

[Carolyn Ponzoa]

Because recovery is such a huge part of my life, I was mostly making videos about my mental health. And the first time I made a video about psychosis, it blew up. And I think it got like 17,000 views. I found out there were lots of people who knew exactly what I was about.

[Will James]

When Carolyn posted about marrying a stranger while psychotic, she got a flood of responses from people who had done some version of the same thing. Today, her account has more than 26,000 followers.

[Carolyn Ponzoa]

I had never, ever met someone who knew what I had been through. So I was honestly really selfish at first because I just wanted to relate to people and I just felt so included for the first time.

[Will James]

You've had good experiences with the system, you've had bad experiences with the systems that we have. If you imagine a system that actually works, what does that look like?

[Carolyn Ponzoa]

I think something integrated with the community so that even if you're symptomatic, you can still have like a trip to the grocery store, some sort of. I don't know if I'd necessarily call it a treatment center or a group home, but some kind of a system where you have people checking in on you, you have people helping you with your medication, people like guiding you, people taking you out in public so that you're not getting lost on your own, for instance. Because I would do that a lot and I a lot of times needed something like my sister who was just there with me 24 7, you know, like a caregiver.

[Will James]

Carolyn says a defining part of psychosis is feeling people distance themselves from you, feeling cut off from society. It was something she felt whether she was homeless or confined to a hospital. And so a system that works to her is a trip to the grocery store, someone to sit with you. If psychosis is slipping into a dream, then maintaining these links to other people is a way of staying awake.

[Sidney Brownstone]

What's your occupation?

[Alix Van Hollebeck]

I'd say first psychoanalyst, second psychiatrist, third, and maybe even before all of that, caretaker to a kid with schizophrenia.

[Will James]

Seattle Times investigative reporter Sidney Brownstone and I are talking with Donald. We're using just his first name to protect his and his son's privacy. So many stories about serious mental illness have a parent and child at their center. And a lot of these stories have a familiar pattern. Donald watched his son Eli go in and out of psychiatric hospitals and emergency rooms, spend time homeless and seek relief in alcohol and drugs. But in this story, the path to insight was not Eli's, but Donald's. It started during one episode when Eli was in crisis several years ago. Donald remembers police officers at different entrances to the house and a moment when he stood face to face with Eli.

[Alix Van Hollebeck]

The police were going to taken away. He said, please, can't I stay with you? And so despite the possible violence, to us we said, okay.

[Will James]

Donald says in the moment, this decision was not rational. It was an emotional reaction to the look of terror in Eli's eyes. But looking back, Donald says he could see this string of short term psychiatric hospitalizations was not helping Eli, that in some way spending a few days in a hospital, then getting Discharged back to homelessness might actually be hurting him. So Donald and his wife decided to try something different to care for Eli at home. This is beyond what many families are able to do, but Donald and his wife decided they could at least try.

[Alix Van Hollebeck]

If we wanted him to remain alive, then this is what we needed to do. There's no treatment that can be substituted for 24 hour care. For the willingness to sit through terrible and potentially violent situations and the knowledge that this is an ongoing process that will take years.

[Will James]

Eli is on medication, but as with many people, it hasn't erased his symptoms. Donald and his wife still had to learn to live alongside someone who could easily slip into psychosis. Eli declined to speak with us, but told his dad it was okay to share this story. As Donald lived with Eli, he started paying attention to the situations that seemed to set off Eli's symptoms. Sarcastic humor, for instance.

[Alix Van Hollebeck]

So today there was a comment that my brother made you and the mouse in your pocket. I forget what it had to do with, but he doesn't understand the innuendo. And so social cognition makes us very cautious about what we say, especially with regard to the use of humor, and always have to be on God for that.

[Will James]

And Donald noticed how Eli reacted to certain changes around the house.

[Alix Van Hollebeck]

You know, there was some issue about a toilet seat that I had put down instead of, he wanted it up and why did I do that? And he's not understanding all these kinds of things.

[Will James]

Donald started to notice how little misunderstandings could plant a seed of paranoia in Eli's mind that could then bloom into psychosis. When Eli is having one of these extreme experiences, do you have a sense of what is going on internally for.

[Alix Van Hollebeck]

Him, I'd say the first and foremost in terms of triage would be terror. How do I help him mitigate the terror he's experiencing? Terror can come from simple things like not being able to grasp something and not knowing something that we would know quite easily. That terror is terror, whether it's internally induced or whether it's externally induced. It's terror and it's in the eye, his eyes.

[Will James]

Donald was noticing the things he and his wife did or said that seemed to accidentally set off this process inside Eli. Donald was shifting his perspective, taking the focus off Eli's behavior and putting it on his own. Psychiatrists are medical doctors, and in medicine, there's a word vector. It's an organism that transmits a disease from one animal to another. A mosquito is a vector of malaria. A tick is a vector of Lyme disease. Donald started to See himself as a vector of Eli's psychosis, Someone whose words or actions had the potential to make Eli sicker. And if he was a vector, that also meant he might have some control over Eli's condition.

[Alix Van Hollebeck]

If I were a vector of disease, it's my thinking, speech, and behavior that I need to modify, all of which can cause another harm. And I also need to recognize that I cannot change the other person in any way. I can only change my response to what it is that I think that they may think and then do something with that. So I want to examine every instant that I can where I might cause another, particularly my son, but hurt.

[Will James]

These realizations allowed Donald to start imagining a world he could help build around Eli, a world Eli could live in. But they also made Donald wonder what other vectors might be out there, maybe even hiding within his own profession, psychiatry. He couldn't ignore how so much of mental health treatment seemed like it could make psychosis worse. Parking people in crisis in noisy, chaotic emergency rooms, churning them through a series.

[Alix Van Hollebeck]

Of brief hospital stays, interviewing people in hallways, requiring the same questions to be asked over and over again, when that is a stimulus for increased hallucination, delusions, overdosing on medications so that when a person gets out, they can't stand up, and then they fall in, get hurt. Sleeplessness contributes to psychosis and delusions, hallucinations. If you can't sleep and you're in a hospital where you can't sleep because your roommate is yelling, that's a contributing cause to an adverse event. The absence of reasonable discharge planning that leads to homelessness and subsequent hospitalizations for medical illnesses. These are at least coincidental, if not causal, but they won't be looked at.

[Will James]

At the core of Donald's frustration with his field, psychiatry, is what he sees as an attitude of doctor knows best. And what's missing is genuine curiosity about how individual people in psychosis are experiencing the world. And maybe this lack of curiosity led to a system that wasn't built around the needs of people who are sick, but instead, what was expedient for the rest of us.

[Sidney Brownstone]

We hear this story over and over again for centuries.

[Will James]

Again, Sidney brownstone of the Seattle times.

[Sidney Brownstone]

Like the first homeless man in Seattle, was found on the beach in psychosis half frozen to death. And the response of the territorial leaders at the time was to try and kick him around to see who would treat him. Found out that he was really expensive, shipped him back off to Boston, where he was originally from, where he died by suicide. While the medicine arguably has advanced the Overall approach of not wanting to take responsibility for people hasn't. Why do you think that is?

[Alix Van Hollebeck]

Interacting with mental distress is extremely difficult. No one wants to be hurt in the process of helping, but that's what the potential is. There's a convergence of systemic issues that doesn't allow us to give thought to very disturbed patients for very long. And I include myself. It's very difficult to live with this. And the quickest way is to do what we've done for centuries, which is to lock people away unseen and to make people invisible and less disruptive. So that's what we do.

[Will James]

In Edward Moore's story from the 1850s, Donald sees what may be the oldest vector of them all, care built mostly around the needs of people who have to see and deal with people in psychosis rather than those who live with it. Over the course of years, Donald and his wife constructed a world for Eli, a carefully regimented daily routine around their sense of what he needs to get through the day.

[Alix Van Hollebeck]

Before he wakes up. My wife and I will have coffee together, just looking at the sunrise and then actually with somewhat dread, realizing any moment he's going to wake up, come into the door and start being in the kitchen to make scrambled eggs might set things off. So being aware of noise is a big issue. And there is in fact some idea that people with a psychotic disposition have different, what's called interoceptors. Like they're differently sensitive to what's going on inside and outside their bodies, especially with regard to sound and pain. Then following breakfast, there's a required walk.

[Will James]

What do you and him talk about as you're walking?

[Alix Van Hollebeck]

Sometimes it could be pretty philosophic, you know, because I'm philosophic and he knows that I like that stuff. We may talk about. So what's for lunch? His freedom from sarcasm is a fantastic thing to learn for me. So if ever I am being sarcastic about some of it or I don't know, he'll find that so off putting that it'll help me stop using my mind to do nasty stuff like that. And so we'll talk about that. So there'll be lunch and then maybe a nap to sort of calm things down. And then there has to be precisely at 2:30 a spin, which happens not with me, but with my wife and him, which reminds us of the ways in which you would take your very young kid out for a walk in the later afternoon. And then he anchors himself through the use of a repetitive watching of Friends, which is his way of socializing. The sitcom Friends the sitcom, yeah. And that's what we could talk about. He doesn't pick sides. Like I might say, you know, I just can't stand Ross. You know, he's so nerdy. I just don't like him. He won't take a side. You know, he's so good about it. It's just not him. And then that's sort of it. So that's a typical day. It's a boring day. That's the way it goes.

[Will James]

It's a routine not built around how Donald and his wife want Eli to be, but how Eli is. And when they go out in the world, they take that perspective with them. Given the experiences that you've had, when you see people who are in distress out on the streets, out, what goes through your mind? What do you feel?

[Alix Van Hollebeck]

Eli and I talk about that, and I'll say, eli, do you think he's mostly drug or mostly psychotic or a combo? And so Eli has a sensitivity about knowing, and he's helped me to know something from his experience in being homeless and doing all this stuff. So first thing I think of is, you know, what's possible for me to do. We have a pack in the back in the trunk for people who are homeless. So if they need stuff, when we come across somebody, we can give them the pack. So Eli is very kind. You know, that way he knows exactly what to do. And if he knows what to do and we're calling him psychotic, certainly we should know what to do.

[Sidney Brownstone]

I could see that that brought up something for you, talking about Eli's kindness. Why do you think that is?

[Alix Van Hollebeck]

Cause. Because in the presence of great compassion that has. Is so selfless. That's what I feel. And so it's. It's that absence of any kind of need of. Of assurance that I'm doing a good thing that makes me tear up.

[Sidney Brownstone]

And your son is like that.

[Alix Van Hollebeck]

Yeah. Yeah. So when he is. When he is him, that's what he's like. And I'd say that most people, if they can calm their minds down and that takes time, it'll be the same for them, all of us. It doesn't take a lot of know how to offer somebody or ask them a question. What can I do to help you?

[Will James]

Maybe in these stories, there's a vision of what recovery could look like for all of us, for fixing this disjointed world we've built for people with serious mental illness. Maybe it starts with insight, finally seeing our collective illness for what it is, noticing all the ways we think of this issue as fixing a social problem we don't want to see anymore, rather than giving people what they need to heal. And maybe building something that works better means shifting our focus off what we want the world to look like and instead asking people with serious mental illness, what do you need? Seeing them not as outside entities, but as parts of ourselves Voices Worth Hearing Lost Patience is a production of KUOW Public Radio in the Seattle Times in partnership with the NPR Network. You can support projects like Lost Patience by investing in the local newsrooms and the specialized beats that make make this sort of storytelling possible. Please consider joining and [e-mail] in seattletimes.com this episode was reported, written and produced by Sydney Brownstone, who's also my fiance, Esmi Jimenez, and me, Will James. Our editor is Liz Jones. Additional editing by Diana Samuels, Jonathan Martin, Brendan Sweeney and Marshall Eisen project development by Laura Grenius. Our music is by BC Campbell. Mixing and sound design by Hans Twight, Logo and branding by Alicia Villa and Michaela Giannatti Boyle. Lots more people helped make this series a reality, including Jeannie Andle, Jim Gates, Randy Fulwood, Whitney Henry Lester, Megan Farmer, Isolde Raftery, Jason Burrows, Karen Sealander, Denise Grisel and Laura Van Tasche. Thank you to Lou Middleton, Carolyn Ponzoa, Donald and Eli Josephine Ensign, Alix Van Hollebeck, Catherine Jonas and Duane Stone for sharing your stories and expertise for this episode. And to everyone who talked to us throughout this project, thank you. If you're looking for support for you or someone else with serious mental illness, we've put some links to resources in the show. Notes thank you for listening to Lost Patience. We hope you'll share it with other people.