At nine years old, I was deathly afraid of Push-Pop ice cream. There was a conspiracy around the ingredients, I knew. A family-owned market down the street from my school sold homemade pastry treats with meat stuffed in them, cigarettes, and ice cream. I got a red Push-Pop once while walking home with my father, and within the first few licks and bites I felt two slimy, textured solids in my mouth. I spit them to the concrete. They splattered, red, oozing, bleeding really: they were my tonsils. Or a portion of my lung; I was dying. Today was the day I’d die. I looked closer: no, they were definitely my tonsils. I threw the Push Pop in the bushes.
The fear didn’t stop there, because I wasn’t an ordinary child. I enjoyed science and thinking and I knew if my tonsils were still in my mouth (I checked, they were) what I ate must have come from the popsicle. They were putting other children’s tonsils in the popsicle, or adult tonsils in the popsicle, or organs, lung tissues, something from the human body in these popsicles. Being a good science student, I knew I couldn’t just accept my theory: I needed proof, and the only way to get proof was to test my hypothesis.
I got more red popsicles. Always, the bleeding, oozing tissues were lodged in the ice cream. Eventually I gave up, sickened by the world, and ignored popsicles until I bought a red Push Pop in high school and realized the bleeding tissues were strawberries.
Fear, fear, fear, life was all about fear. I feared the kids at school now, their voices, their eyes, their body language, their parents. I feared the teachers, I feared strangers, I feared dogs, I feared criticism, I feared fun, and I feared sleep—the nightmares were every night, all night, so vivid I woke up still hearing sounds and seeing images leaked from my subconscious. What no one knew, including myself, was that I feared home as well. I feared the drugs and the alcohol, I feared the violence, I feared speech, I feared being wrong, and when we were homeless I feared the world. But I didn’t fear silence.
I didn’t fear silence because I was told daily I should be seen and never heard: those words exactly. I was silenced before I learned how to speak.
This was the story no one cared to know. It was a story I didn’t know much myself, even though I’d been living it. I didn’t know that the violence affected me other than a sting or a whelp or a bruise. I didn’t know the emotional torment and constant threats had wrapped such a tight ring around my brain, my thoughts, my actions. I thought trauma only consisted of sexual abuse, car accidents, house fires, and war; I didn’t think I qualified.
Qualification is key in the current mental health system. There’s a burning need to justify every experience with a phrase that scribbles smoothly on a chart; there’s no appreciation for the variety of life. At least, that’s the message I received from visit after visit with psychiatrists and therapists, that my mental state wasn’t severe enough to qualify me as a “real” mental health patient. My very first label, I hold it near and dear to my heart for a variety of reasons, was social anxiety disorder.
The fear blossomed further then: if I told the truth about my experiences, about the self-harm and the burning need to end my life, if I spilled any of my real thoughts across the table, if I opened up, then what? What did treatment for severe consist of? Did I want to be severe? I’d get attention, I’d get taken seriously, if I was. Did I want to be taken seriously? Or did I want the comfort of silence?
I chose silence. I chose silence until I read Brain Disabling Treatments in Psychiatry: Drugs, Electroshock, and the Psychopharmaceutical Complex by Peter Breggin in high school and passion filled me. Frustration too, and wonder: did people know about the relationship shared between the APA, insurance companies, and large pharmaceutical companies? Were they informed? Or was this just conspiracy and my fear feeding a lie? As any good amateur scientist would do, I designed an experiment: I would be honest for the sake of experiencing the system.
I opened my first can of beans to a therapist working under Anthem BlueCross insurance. I knew I would be diagnosed and recommended to a GP for medication—the insurance paperwork required it. Depression, this therapist said. My first medication was voluntary, under the generic name Lexapro.
Lexapro was followed by more voluntary trials with benzodiazepines, SSRI’s, SNRI’s, atypical antipsychotics, beta blockers, and allergy medications with anxiolytic effects. When I burst through my psychiatrist’s office with electrified hair and grimy clothes blabbering about a student playing puppet with my mind, with my body, blocking my thoughts, and worst of all, conspiring with our fellow classmates to get me expelled from college, she sent out another prescription and informed me on the definition of a delusion—as if I didn’t know. When I left, she phoned my psychologist without informing me. I never got the prescription filled; I lost it.
By then, I was in my second semester of college, curing Ebola with a high school science textbook and some specific sound frequencies. My car had broken down in the middle of the street, then put itself back together as if the universe expanded then contracted within the tiny space of my vehicle and the Egyptian God Thoth sent me the secrets of the universe.
The experiment ended my third year of college. I was done testing the medications that piled on weight, that fostered heart palpitations, that fed nightmare after nightmare, that made my thoughts wade through sludge and my limbs float in space, that made doctors prescribe more medication for the side effects of the current medication. I was done looking high on heroin in pictures and enduring withdrawal, regardless of any mental health diagnosis: by now we’d flown through all the anxiety disorders, briefed areas of bipolarity, and landed in the realm of dissociative disorders and the schizophrenia/psychosis spectrum. With only a loose consensus on what was really “wrong” with me, I concluded that the acceptance of any diagnosis only further drilled “symptoms” into my head because everything became a symptom of whatever, and I was insane.
I concluded that some professionals have a lot of trouble understanding us: they’re fearful, and that makes me fearful of their fear. They read about us, they study us, they’re trained to deal with us, not encouraged to interact with us. After spending years under violence, control, and instability, being oppressed by the system was only repetition of my childhood.
My computer found Second Story Peer Respite House by random chance at 3 a.m. I interviewed with the intention of getting a job I really didn’t understand yet, and entered desperate and drenched with nervous adrenaline. I’d been through three jobs in the past six months, I needed money, and I was sure I was “crazy” enough to qualify for the position.
Two hours into my first shift a month later I learned this wasn’t really a job. This wasn’t some mental health facility—it wasn’t a facility at all, but a home; it wasn’t just a peer program, or any old house on any old street. There were stories being told and molded here, comraderies being fostered, a community within the community, varieties of personalities, of experiences, and growth. People were guests—not clients, not patients, not case numbers lost in an unorganized file cabinet—but guests in charge of their dishes, their medication, meals, their day, their health, their wellness. They made a voluntary choice to spend two weeks in this house, free from judgment, labels, force, or mistrust; in return they were gently challenged, not with aggression but with perspective changes, responsibility, and freedom. I noticed that we, the peer team, were challenged often too, taking special precaution towards our own judgment, our own fear, and our own understandings. Together, it was a support of each other, and when conflict arose it was met with conversation: that confused me.
I got confused because I’d never seen conversation solve anything. In my house, conflict didn’t exist: everything I did was wrong, and if I didn’t agree, I’d be forced to agree. In the hospital, I never saw much conversation either. Once in Intake, a man argued with a nurse over a urine sample. He didn’t want his fluids in their hands, frightened of corruption, and she dismissed him as paranoid. At five in the morning they stood face to face, him an inch or so above her, and her blonde and fierce. As he babbled his explanation she stomped her foot in a tantrum and shouted: “I’m not going to argue with you, just pee in the cup!”
There was conversation between us patients, though. Another man, scrawny and silent, shuffled up and down the hall kicking on different doors until more nurses shouted. He followed the man who’d refused to give a urine sample, and had a silent connection with him, I like to think; they seemed close, however unwilling one or the other was. The scrawny man sat in the doorway of the common area and refused to move. The nurses couldn’t budge him, we couldn’t budge him. Staff kneeled in front of him and spoke loudly into his ear, “What do you want? What do you want? What do you need? Huh?” in a tone reminiscent of a mother to her low-functioning toddler.
Because he would not move, because he refused to speak, they decided more medication would suffice. The nurse told him loudly in his ear that she’d bring some for him. I glanced at the young girl next to me—we’d been cracking jokes for a few hours, and we shared a telepathic moment of disapproval. Once the nurse stepped away, the man ran up and down the hall on his hands and knees, grunting and kicking doors.
Another man approached him, and they sat against the wall, conversing. I never heard their words, but the scrawny man spoke with the rest of us afterwards; he was much more lucid than he appeared outwardly. The nurses came back, he took the medication dutifully, and fell asleep in a chair.
There was a power in that conversation I didn’t understand until I was given the opportunity to understand it. There’s power in a story, in an experience, and a respect for a different state of mind when you’ve been in that state of mind yourself. In traditional mental health services, there’s what I like to call a “clinical arrogance” keeping doctors separate from their patient’s experience, disconnected from curiosity, sometimes cold to ideas which differ from their own knowledge. At Second Story, in this specialized type of peer support, there’s connection, disconnection, and reconnection, a process of learning each other rather than dismissing each other. Second Story appreciates variety, and that’s what I appreciate about Second Story.
Even Microsoft Word recommends I switch that word “learning” to “teaching”—a testament to my words here. There’s such an overwhelming focus in both the clinical mental health world and the mental health community itself on teaching patients, teaching the public, teaching the world about a list of so-called abnormalities that result in so-called disorders, that we’re stuck separating the experiences from the person: you are not your illness, right?
It’s known widely in the scientific community that neurological connections in each brain are unique to the host, to the point that individual identification could be made from the connections alone. It would follow, then, that each individual experiences life a little different than his neighbor. It would follow, then, that each individual experiences pain, turmoil, trauma, grief, and the linear progression of life slightly different than her neighbor. These experiences aren’t separate from the person—they shape how that person sees the world, how they react to the world, and how they cope with the world. To separate those experiences from the person, to call them sick, to teach them to others as abnormalities needing correction, feels barbaric.
It feels as if humans are being taught to fear being human. That’s a fearful thought.
I’m a lucky one; I never drowned beneath the surface of the system. I’m a lucky one; I’ve been given a chance to participate in a respite house that values but never fears humanity, compassion, trust, pain, confusion, and struggle. I’m a lucky one; in walking side by side with the guests, in stepping into their experiences, I’ve learned more about myself than I’ve ever wanted to know. That’s really what the system is missing: an opportunity to reflect on itself and the meaning of connection.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.