The Invisible Men
This piece was originally published in Grit City Magazine, Hard Copy 22.
When I sat down to write this story, I thought carefully about how, as a storyteller, I could accurately share the experience of being erased as a human being with mental illness. I thought of literature that had attempted to tackle the subject: Ken Kesey’s One Flew Over the Cuckoo’s Nest, Susanna Kayson’s Girl, Interrupted, and Jeffrey Eugenides’ The Virgin Suicides. I thought that maybe the story had already been told. Yet, as someone who has lived it, these accounts did not resonate with me. Perhaps what I needed most was an acknowledgment that no two forms of madness are the same; each is unique to the person from whom it is lived. My toughest fight spanning my institutionalizations was not for my freedom but for my identity. My observation of madness was that it exists alongside deeply entrenched inequities. Madness, I came to learn, lives in the shadows of a history of stigma, death, and despair.
This is a story of how human beings are erased because of their symptoms, their diagnoses, their hospitalizations, or lack thereof. This story is personal, a story of observation, and of what it means to be invisible.
Institutionalization
I was first institutionalized in November of 2020 and again in June of 2022. Both times were for major psychotic episodes that involved delusional thinking, intrusive thoughts, auditory hallucinations, and mania. I live with schizoaffective disorder, a lesser-known cousin to schizophrenia and bipolar disorder that affects only about 0.3% of the population.
The 2016 Study of Mental Health in Pierce County, published by the League of Women Voters of Tacoma-Pierce County, cites that there are around 5% of people living with serious mental illness (schizophrenia, major depressive disorder, or bipolar disorder) in the United States today. The report focuses its study on how people access the mental health system in Pierce County, concentrating on patients who have “experience[d] a crisis and [were] evaluated as part of emergency hospitalization or incarceration”. I fit firmly into this category.
It was around 5:30 am on November 20, 2020, that I found myself running through Wright Park, tears streaming down my face. My mind was full of garbled nonsense and my delusions were frightening. I stopped next to a man walking his collie and I knew the dog could read my mind and would tell everyone about all of the horrible things I wanted to do. I ran faster, searching for the entrance to Tacoma General’s Emergency Room. I found myself lost for nearly half an hour. When I finally made it to the front desk, I slammed my ID down and calmly whispered, “I am having an acute psychotic episode.”
In my madness, the world that existed was wholly my own. My delusions were my north star. My auditory hallucinations were as real to me as the birds singing outside. The intrusive thoughts were embedded in my brain like a bad pop song. Yet, when I am in psychosis, I am still me.
There’s a misconception that people in psychosis are unaware they are psychotic. I have remained aware during both my psychotic episodes, but this did not make my psychotic world any less real to me. There is also a misconception that psychotic people are unpredictable and dangerous. Statistics show that people with psychosis are far more likely to be the victims of violence than the perpetrators.
On the ward
I woke up to a phlebotomist in my room. They were there to draw my blood, but I was so tired from the long day that I slept through it. I woke up periodically to a flashlight in my room. As soon as it was there, it was gone. It happened once an hour, but it didn’t bother me. When breakfast came the next morning, I was told it was mandatory. I chose not to eat.
Once I made it to the med line after breakfast, the med nurse scanned my ID bracelet, asking only my date of birth. There was a new, small pinkish pill in my cup. I did not know what it was, but I was told I had to take it anyway. I was told my psychiatrist would go over it with me. This is when I learned that I no longer had choices.
Inside a psychiatric institution, there are always staff following you around with clipboards. They monitor your progress- whether or not you’re sleeping (too little or too much), if you’re participating in classes and activities, if you’re socializing (too little or too much), if you’re eating (too little or too much), and even if you’re showering and using the restroom.
Inside, I’m reduced to my medical ID bracelet. It is scanned for everything. Meds, vitals, medical tests. Socializing with other patients is encouraged to an extent, but I am supposed to focus on my own healing. Much like jail, no one discusses why they’re inside or their diagnosis. Every so often, the elevator doors opened and someone came in on a stretcher wearing the same color scrubs and the same medical ID bracelet that we all wore. I would usually see them at breakfast the next morning.
I stayed hospitalized for five days. I was let out the day before Thanksgiving. I remember standing in the parking lot, smoking a cigarette and telling myself, out loud, that I would never come back. I stared at the building that held my madness. By then, my new medication had started working and I was no longer hearing voices or suffering delusions. It all felt like a strange, waking dream. To this day, there are parts of it that I believe I have fully blocked from my memory to protect my own feeble mind.
In a year and a half’s time, I would find myself back to square one. I would become psychotic again, each time worse than the last. I would learn that the only thing separating me from street psychosis was privilege.
The invisible men
Sometime last winter, I watched a psychotic man tap on cars in the municipal courthouse’s parking lot for over 20 minutes. Talking to himself, he would walk up to a car, tap on it, and stand there for a while before moving on to the next car. The man was not violent. He was not damaging the cars. Yet, I worried for his safety. I worried about what would happen if security, and by extension, the police, became involved. He was an older black gentleman wearing only shorts, sandals, and a towel in the middle of winter. He was shirtless. I wondered who to call for help if anyone. I wondered how to keep him from an altercation with the Tacoma Police Department, as I feared calling the police on a black man, especially a black man with serious mental illness.
The consistent entanglement of our carceral system with serious mental illness is an old tale. So much so, that diversion programs have been set up as a part of crisis response in Pierce County. America’s jails are its largest psychiatric facilities, with the Treatment Advocacy Center citing that 1 in 5 inmates have a mental illness. The number is even higher in the Pierce County jail system, with 26% of inmates on psychiatric medication in 2015, according to the Study of Mental Health in Pierce County. For now, it remains that police, fire, and EMTs act as first responders to mental health crises in Pierce County.
I think about how many times I’ve been in situations where someone presenting with active psychosis is in front of me and I have had no idea how to respond nor have had any resources to do so. While it is irresponsible to continue to link psychotic disorders to homelessness, it should be noted that, according to NAMI, 20% of homeless individuals live with schizophrenia and that 60% of people living with the illness in the United States are not receiving treatment for it.
Serious mental illness is an epidemic. What exacerbates it is the lapse in treatment and social support for those living with schizophrenia, major depressive disorder, or bipolar disorder. This is because of failures in our mental healthcare system, lack of access to care, stigma, and anosognosia. Anosognosia is a symptom of psychotic disorders that prevents an individual from recognizing they are sick. People with mental illness are at a crisis point and are being treated in shelters, on the streets, and in hospital emergency rooms rather than in supportive outpatient environments in stable housing. It is America’s social issues that are comorbidities.
Jonathan M. Metzl’s book The Protest Psychosis: How Schizophrenia Became a Black Disease was explosive for me. So much so that my own family questioned my sanity while I tore through it. Metzl’s book chronicles the demographic shift at Ionia State Hospital in Michigan during the 1950s and how black men were increasingly diagnosed with schizophrenia (a rate that, today, is still four times higher than their white counterparts). Metzl’s book catapulted me into studying the history of race and mental illness, particularly from the African American lens.
I became interested in the subject because of both the casual and overt racism I had witnessed on the ward. This was something I internalized and came to face the fact that as a white woman whose family is of fortunate financial means, my story looked very different from others.
Patients who were considered the most vulnerable by definition generally came in with no support. There were murmurs about “frequent fliers”, who would rotate in and out of the hospital and back again because it was a place to be fed, clothed, and provided a safe place to sleep. There was also the problem of who was more likely to be voluntarily or involuntarily committed. While I only stayed in voluntary wards, I became curious about involuntary commitment after I left. According to the Journal of Psychiatric Medicine’s article “Racial and Ethnic Inequities in Inpatient Psychiatric Civil Commitment”, people of color are overwhelmingly more likely to be involuntarily committed.
Inequities in our system bring mental healthcare to a crisis level. A lack of systemic resources such as stable housing, affordable medication, food security, medical insurance, technical assistance, casework, and follow-up care are all indicators that there is deep inequality in place. Pierce County’s most vulnerable populations bear the brunt of this gap.
Becoming Schizophrenia
Earlier this year, I was in professional training and the class was shown a video by a mental health advocate and Ph.D. named Patricia Deegan. Deegan lives with schizophrenia and the video was meant to be motivational. After watching the video, I found myself so triggered that I blurted out to the whole class that I was schizophrenic. I was so embarrassed that I didn’t talk in class for almost two days afterward.
Dr. Deegan says: “The concept of recovery is rooted in the simple yet profound realization that people who have been diagnosed with mental illness are human beings.” Deegan speaks to the erasure of individuals with mental illness by both the medical community and self-stigma.
Initially, I was diagnosed with major depressive disorder with psychotic features. Schizophrenia spectrum illnesses are rarely diagnosed after a first episode of psychosis. I stayed with this label of major depressive disorder for a year and a half. It didn’t bother me. My family knew and a few friends knew, but it wasn’t part of who I was.
Then, in June of 2022, I became schizophrenic.
I was once told at a NAMI support group that my “diagnosis [was] not a death sentence”. But it felt like one. There are tens of millions of people with depression in the United States, but schizophrenia? That did not feel like just a diagnosis. Schizophrenia felt like a pejorative. There is something called self-stigma that I think many people with serious mental illness suffer from. It’s the idea that we buy into the stigma that exists about our disease and apply it to ourselves. I was bathing in it.
I began to search for meaning in my illness. I wanted something, or someone, to tell me that I was okay despite the mounting personal evidence that I was becoming the dreaded word I feared: unwell. There is no word in the English language to describe the ache of knowing your reality is different from the rest of the world’s. There is no way to adequately describe the longing to be well.
Schizophrenia’s history is long and dark. It is still widely believed by the general public that people living with the illness are dangerous. Schizophrenia is equated to mass shooters and murderers. Schizophrenics are people on buses, talking to themselves. I internalized it all. I became schizophrenic. I chose my illness over my identity. In doing so, I erased who I was. I became the woman with schizophrenia instead of all of the brilliant things I was before the disease took my life. I clung to this new identity as a way to make sense of how I had been so violently shattered into a chasm of before and after. I did not have the tools to pick up those shattered pieces for years.
Yet, eventually, those years passed. Slowly, but surely, they passed. I began to see new parts of myself emerge. After losing my career, my home, and my relationship to schizophrenia, I began to gain new things back. I began arranging flowers as a creative outlet. I started a new job. I started to notice who was most important to me in my life. I voraciously read everything I could get my hands on about schizophrenia and schizoaffective disorder. I reached out to learn how I could support individuals like myself and turn that into my new life’s path. Where the system was broken, I became determined to fix it.
Humans can erase themselves, too. My recovery is not linear. It is not easy. It takes work, and an incredible amount of time, money, and social support to realize that I am not my illness. It takes extreme privilege and that weight is not lost on me. What I acknowledge, however, is knowing that I can define my story. Though I will always battle with my illness, I am now writing rather than erasing.
Erasing madness
It was in the psychiatric facilities that I learned about madness and all its presentations. I learned that people with serious mental illness are some of the most tenacious and resilient people I’ve ever met. I learned that the sane world always overlooks the seriously mentally ill because of their shifting realities. But most importantly, I learned that no two people are alike in their madness. Each person is an individual who should be honored. A diagnosis is never a death sentence.
According to the Pierce County Behavioral Health Improvement Plan, at any one time in Pierce County, there are up to 196 patients in emergency, voluntary psychiatric beds. That is 196 medical ID bracelets. 196 med cups. 196 breakfasts, lunches, dinners, and snacks. 196 sheets to wash. 196 cups of shampoo and conditioner. 196 coloring sheets for the rec room. 196 rolls of toilet paper. 196 towels. 196 toothbrushes. 196 individuals reduced to numbers.
I have been 1 in 196. I have been mad and have come out on the other side. For madness, I have learned, is impermanence. It is an inconstant state of neither here nor there. It is the sane world that cannot tolerate the fluctuation of reality and thus reduces it to a number, to an ID bracelet. But to conceal it is to erase it.
Khalil Gibran writes in The Madman, “I have found both freedom and safety in my madness; the freedom of loneliness and the safety from being understood, for those who understand us enslave something in us.” Perhaps it is our madness, and our invisibility, that protects us.
