Longreads

We Need to Talk About Madness: A Reading List

(filadendron/Getty)

Advertisements

When I was 15, a teacher I was very close with killed himself over winter break. I found out about it in an AOL chatroom the night before school resumed. My friends were talking about how the elementary school science teacher had died. “The one from when we were kids?” I typed into the chatroom, sitting on the couch between my parents, as the Jennifer Garner show Alias played on our television. “Shit,” one of my classmates typed. “We weren’t supposed to tell her,” another wrote.

John Wake was my little brothers’ science teacher, and my after-school photography teacher. I leapt from the couch and called my homeroom teacher at his home. In a quiet, heavy voice, he confirmed what my friends had let slip. I screamed. My parents hovered around me, trying to understand what was happening. Eventually one of them took the phone. I was sobbing, incoherent, and couldn’t breathe. I needed air. I ran to the elevator and my father followed me. He walked me down and back up our Manhattan block in pouring January rain, his arm tight around me as I sobbed, tucked into his armpit. The next day in school I was crying at my locker and the guidance counselor walked by. He stopped and turned around after passing me, and asked if I was okay. I looked at him and said with all the raw teenage emotion in my body, “No. My favorite teacher killed himself.” The guidance counselor looked back at me, said he hoped I’d feel better, and walked away.

My own mental illness had made itself known a few years earlier. Mr. Wake and I had a special bond, maybe because something in each of us recognized itself in the other person. I had always been a Good Kid — didn’t smoke, didn’t drink, had never kissed a boy. But when Mr. Wake died, I became angry at the adults in my school. I needed them to talk about this monster that lived inside some of us, sometimes quiet for years at a time, occasionally rousing to try to kill us. When they wouldn’t, I punished them the only way my teenage self knew how: I became Bad. I smoked cigarettes in school, cut class to get stoned, threw tantrums at teachers and stormed out, showed up drunk to a school dance with the valedictorian. The adults in charge ignored my acting out, for the most part. I transferred to a new school at the end of the year, in large part because the adults who interviewed me there didn’t look away when I confronted them with my sad, ugly, unwieldy pain.

I try now, as an adult, to be sympathetic to those adults at my old school, who shied away from the conversation I so badly wanted to have. They were probably ill-equipped for it. They were probably dealing with their own pain. They probably worried that I wanted answers they didn’t have, that simply didn’t exist.

Talking about mental illness is possibly the most vital necessity for the health of those of us who have it. But doing so is terrifying. Some of the kindest and most progressive people I know have tried to tell me I don’t need medication. They don’t know how damaging it is when they say that, so I don’t hold it against them. A lot of people don’t know that resistance to medication is one of the main things that kills people like me. That depressives are prone to blaming themselves for everything, that I already have this monster inside me telling me everyday, “You just don’t try hard enough. You’re just lazy. You’re just selfish.” Mental illness is hard to understand because it’s invisible and complicated. We know so little about the science of it, and are conditioned to talk even less about the experience of it.

Talking about is terrifying because it could possibly tank your career. Who wants to hire someone who has a chronic illness that is impossible to cure and difficult to treat? Especially when that illness can make you nonfunctional? Sometimes it seems like you can’t talk about it without being defined by it. Now that I’ve told you I have depression, will you think of me as a writer or a reporter or an occasionally funny person you know online? Or will I be that woman who used to report and write until she wrote about her depression? Will editors think better of assigning me stories, worried that I can’t handle the work? As psychologist Nev Jones notes in David Dobbs’ recent piece for Pacific Standard, “The Touch of Madness,” we often tell people with mental illness to be less ambitious — “settle for jobs shelving books,” in Jones’ words. I have been a freelance journalist for six months and there has not been a single day when I haven’t thought about a therapist I saw when I was 18 who told me that my illness meant I could never freelance.

David Dobbs writes well about the “othering” of the mentally ill in his piece:

Reading philosophy helped Jones think. It helped order the disorderly. Yet later, in college, she lit up when she discovered the writers who laid the philosophical foundation for late 20-century critical psychiatry and madness studies: Michel Foucault, for instance, who wrote about how Western culture, by medicalizing madness, brands the mad as strangers to human nature. Foucault described both the process and the alienating effect of this exclusion-by-definition, or “othering,” as it soon came to be known, and how the mad were cut out and cast away, flung into pits of despair and confusion, leaving ghosts of their presence behind.

Dobbs’ piece, and Jones’ work, are specifically about “madness” — psychosis and schizophrenia — which is a different beast than depression (though depression is sometimes experienced by those with psychosis or schizophrenia). Those who experience schizophrenia — typically a more obvious, less invisible madness than depression — suffer the opposite problem: rather than being told they could just try harder, be healthier, sleep more or less, eat better, exercise more, “Western culture today continues to view schizophrenia as something essentially biologically fixed, invariably progressive, and, with rare exception, permanent,” per Dobbs. But the fundamental point — that “othering” those whose minds sometimes cause them hardship only intensifies that hardship — holds true for both experiences, especially in the West. As Dobbs writes:

When the director of the World Health Organization’s mental-health unit, Shekhar Saxena, was asked last year where he’d prefer to be if he were diagnosed with schizophrenia, he said for big cities he’d prefer a city in Ethiopia or Sri Lanka, like Colombo or Addis Ababa, rather than New York or London, because in the former he could expect to be seen as a productive if eccentric citizen rather than a reject and an outcast.

Dobbs’ piece includes fascinating historical research about the differences in psychosis experienced in different cultures and the fascinating field of “psychiatric anthropology” or “biocultural anthropology.” These fields see culture as a series of concentric circles, with the outermost containing the institutions (“government, universities, clinics”) and norms (laws and medical standards, as well as those defined by literature or history) and the innermost containing our personal social world — friends, family, colleagues, neighbors, peers. Our interactions with the denizens of these circles create culture — which is precisely why “othering” the “mad” is harmful, as Dobbs explains:

When people in mental distress are shunned and relegated to a class of others needing care away from the rest of us, they are pushed outside of culture precisely when they need it most. They may seem utterly detached from reality. But they will keenly comprehend their exile.

Part of Dobbs’ story recounts Jones’ own experience with madness. I’m particularly grateful for the inclusion of what happened when Jones, conscious that something in her had changed, sought help from a psychologist who said she couldn’t help her. Jones stopped going to therapy. This is, to me, part of why not shunning the mentally ill from culture is so important. Psychologists and psychiatrists are humans just like us, flawed and weird and wrestling with a field that sometimes seems unknowable. Everyone I know who has interacted with therapy has struggled to find treatment, felt stymied by the trial-and-error of seeking someone with whom they can connect and also trust. Isolation makes that struggle so much harder.

Even when a friend helps Jones seek treatment, Dobbs notes it was “a fraught venture”:

…because, in much of the Western world, an initial medical visit often accelerates a first episode. A 2013 review, for instance, found that a first hospitalization often caused psychotic patients distress rivaling that caused by the symptoms that drove them to the hospital. The care could wreak as much havoc as the ailment.

Emergency rooms are by nature horrible places for someone in trauma, and inpatient psychiatric facilities are often not much better. It is common to treat the mentally ill as though they cannot understand their own illness. That is very often not the case, especially in the beginning of an episode. Jones always knew her hallucinations and certain perceptions were not real to other people. Her education might have helped with that, but it didn’t help her to be treated with any more respect by the healthcare system. When a friend took her to a facility for an intake appointment, the nurse ignored Jones and told her friend, “I think she’s a schizo” right in front of her.

Public violence in America is often perpetrated by people with mental illness. This results in a perception that is contrary to fact: the vast majority of us, the mentally ill, are non-violent. But when these public acts of violence happen, our culture demands an explanation. American society is disinclined to regulate weapons that can mete out violence, so the explanation becomes “The mentally ill are dangerous.” Guns don’t kill people, mental illness does.

This perception proved extremely damaging to Jones when people in her Ph.D program who she had shared her illness with became afraid that she would go the way of the rare but high-profile violent mentally ill. She was banned from campus temporarily, returned only to feel alienated, then was kicked out of her program by professors who said some of the most damaging things you can say to a mentally sick person:

“The decision strikes the committee as simple — you clearly do not have your act together and we have no reason to believe you ever will.” Another professor: “you are a burden on the instructors.”

Dobbs aptly describes mental illness as “a horror experienced in solitude.” But he and Jones also highlight how that solitude needn’t be compounded by the concentric circles of culture in which the mentally ill person exists. It is a painful Catch-22 that the sicker a person is, the more she needs to talk about her sickness, and the scarier that talk is to the people around her. Dobbs quotes Erving Goffman, author of a  classic 1963 study, “Stigma: Notes on the Management of Spoiled Identity”:

The more there is about the individual that deviates in an undesirable direction from what might have been expected to be true of him, the more he is obliged to volunteer information about himself, even though the cost to him of candor may have increased proportionally.

Being honest about her sickness derailed Jones’ life and sunk her frighteningly deeper into madness. But years later, after getting the opportunity to join a different Ph.D program, she blogged about her sickness, and it brought her in touch with a cohort with whom she could discuss her experience. She also notes, compellingly, that the defining characteristic of many of the violent mentally ill is isolation. More often than not, the backstory of these perpetrators involves stymied attempts at obtaining help. In Jones’ own story, she was aware her psychosis was not reality until she experienced cultural banishment. In isolation, her psychosis became her only reality.

Here are a few other good reads regarding mental illness.

1. “FSU Shooter’s Friends Tried To Get Help For Him Months Before The Shooting” (Michael LaForgia, Tampa Bay Times, November 2014)

I think about this piece constantly and have shared it with every mental health professional I’ve ever met. It’s an excruciating and invaluable ticktock of how a mass shooter tried desperately not to become a mass shooter.

2. “How to Talk About Suicide on Father’s Day” (Ashley Feinberg, Gawker, June 2015)

Feinberg writes compellingly not only about her experience as the daughter of a suicide victim, but the discomfort around talking about suicide and mental illness:

Suicide is uncomfortable, it’s a downer. It makes people cast their eyes away, to the left, to the right—anywhere but at you. “Oh… I, wow. That’s really—jeez. I’m sorry.” They apologize. Their eyes dart back to you, pleading. Shit. Were those the right words? Did it go away? Are you broken?

Whether or not this is actually what they’re thinking doesn’t matter. Because as soon as the word “suicide” falls from my lips, the air becomes heavy, conversations strained, and all the negative space in my head fills with one, sinking thought: “They look so uncomfortable. Are they wondering what’s wrong with me?”

3. “Should a Mental Illness Mean You Lose Your Kid?” (Seth Freed Wessler, ProPublica in partnership with The Daily Beast, May 2014)

Wessler investigates “predictive neglect,” a justification used by authorities in more than two dozen states to take children away from parents with mental illness.

4. “Homeless and Mentally Ill, a Former College Lineman Dies on the Street” (Juliet Macur, The New York Times, December 2015)

Macur chronicles the mental decline and eventual death of Ryan Hoffman, once a promising college football player.

5. “Where Psychiatric Care Is Scarce, Religious Institutions Are Stepping In” (Lindsay Holmes and Beth Shelburne, The Huffington Post in partnership with WBRC, September 2017)

Holmes and Shelburne look at an interesting antidote to the cultural or social isolation of the mentally ill, especially in cases where medical treatment is hard to come by: support from faith-based organizations.

6. “Knitting Myself Back Together” (Alanna Okun, BuzzFeed Reader, October 2014)

Okun’s essay about treating her anxiety with knitting spawned a forthcoming book of essays about crafting.

7. “The Concussion Diaries: One High School Football Player’s Secret Struggle with CTE” (Reid Forgrave, GQ Magazine, January 2017)

Forgrave tells the heartbreaking story of a high school football player who realized the sport he loved had wreaked havoc on his young brain.

8. “The ‘Madman’ Is Back in the Building” (Zack McDermott, The New York Times, September 2017)

McDermott was a public defender when he had a psychotic break. He ultimately left that job, deciding the “pressure cooker” environment couldn’t work with his illness. In this piece, he writes about that experience, and how his mother helped him through it.

Advertisements