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.