![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
amado1Binge-read this book over the weekend. It's a nonfiction look at mental illness, identity, and the way that a diagnosis can play with your sense of self, told through case studies.
Section 1: Rachel and Hava
At the age of six, author Rachel Aviv was institutionalized for anorexia, making her possibly the youngest-ever anorexia diagnosis (so far as she can tell). When she joined the ward, Rachel's only anorexic behavior was that she wouldn't eat, and she had gotten the idea from Yom Kippur, where she learned for the first time that she could say no to food.
But on the ward, Rachel met an older girl named Hava, also Jewish, with an eerie resemblance to Rachel and a keen intellect. Hava taught Rachel how to REALLY be anorexic: how to count calories, do jumping jacks at night to make up for your excess fat, compare yourself to other girls, and burn calories by only sitting down when it was time for bed. Rachel's parents noticed with frustration that their daughter was getting worse at the ward, but Rachel made a sudden and complete recovery one day when she was just ... hungry. And suddenly didn't care about not eating.
Cured, Rachel left the ward and never returned. In this section, she notes that hunger strikes are one of very few options children have to make their displeasure known. In Sweden, children from former Soviet and Yugoslav states were diagnosed with "resignation syndrome", where after being denied asylum, they took to their beds, stopped talking, and refused to eat. Refugees from the same countries, who settled in different Nordic regions, did not suffer from this syndrome at all. Upon interviewing these kids and their families, Rachel learned that many of them knew other people with resignation syndrome before they themselves showed symptoms.
"My conversations with families and doctors in Sweden made me reconsider my early experience with anorexia," Rachel said. "Something about the mute, fasting children in Sweden felt familiar to me. For a child, solipsistic by nature, there are limits to the ways that despair can be communicated. Culture shapes the scripts that expressions of distress will follow. In both anorexia and resignation syndrome, children embody anger and a sense of powerlessness by refusing food, one of the few methods of protest available to them. Experts tell these children that they are behaving in a recognizable way that has a label. The children then make adjustments, conscious and unconscious, to the way they've been classified. Over time, a willed pattern of behavior becomes increasingly involuntary and ingrained.
"The philosopher Ian Hacking uses the term 'looping effect' to describe the way that people get caught in self-fulfilling stories about illness. A new diagnosis can change 'the space of possibilities for personhood', he writes. 'We make ourselves in our own scientific image of the kinds of people it is possible to be.'"
Section Two: Ray
Through the book, there's a recurring theme of "insight."
"In the starkest terms, insight measures the degree to which a patient agrees with his or her doctor's interpretation," Aviv says.
Ray Osheroff was a successful doctor, married with two kids, who owned three dialysis clinics when he had a mental breakdown. Within a few years, Ray was divorced, had no contact with his sons, and was walking eight hours a day, with blackened flesh on his toes from pacing so much. His business partner convinced him to check into the empathetic and care-oriented Chestnut Lodge, where therapists formed familial relationships with patients and encouraged them to dig deep into the roots of their problems for better understanding.
Ray was a problematic patient. Before entering Chestnut Lodge, he'd read a book about then-new antidepressants, and he firmly believed this was the way out of his mental break. But at Chestnut Lodge, medication was verboten. Ray and his doctors had a fundamental disagreement in how to treat his illness, and doctors noted that Ray lacked insight into his problems, and even classified his belief that depression was rooted in the brain as a "possible delusion".
"He kept talking about his brain, as thought he might have some thoughts that there was something wrong with his brain in a physical sense," one doctor noted.
Eventually, Ray transferred to a pro-medication clinic where he was prescribed antidepressants. He instantly felt better. Food no longer tasted rotten, like it had been soaked in saltwater. Sex had its appeal. His passion for music came roaring back, and doctors noted that his famous kindness and generosity had returned. Ray felt he was fixed and tried to rejoin normal life, but his family wasn't so convinced. For the rest of his life, Ray's sons were exasperated with his fixation on his time at Chestnut Lodge, his compulsion to write and revise memoirs of his time there, his neurotic drive to repeat the story of how he ended up there over and over again. Ray struggled to keep a job and even wound up in trouble for insurance fraud; at his granddaughter's birth, he ignored the baby and badgered his son about reading the new revised edition of Ray's memoirs.
Ray's sons believed that their father's nervous breakdown stemmed from a simple problem: he was a talented musician, he played beautifully, and he longed to be a professional ... but his dad pushed him to become a doctor instead. No matter how successful he was as a doctor, it would never satisfy Ray, because in his heart he wanted to be a musician. Since he could never admit that, Ray insisted the problem was purely physical, and that antidepressants had totally cured him.
Quote:
Ray's friend Andy Seewald told me that Ray often compared himself to Ahab in Moby-Dick. "The Lodge was his white wale," he said. "He was searching for the thing that had unmanned him."
The Chestnut Lodge shut down in the 90s thanks in part to a long-term study that followed 400+ patients treated between 1950-1975. Only a third of schizophrenic patients had improved or recovered, roughly the same percentage of patients who recovered in any other treatment setting. Basically, Chestnut Lodge's family-style, empathetic method couldn't be shown to have any better impact on patients than pure medication or pure electroshock or pure neglect.
Unfortunately, as joints like Chestnut Lodge shut down, a new model swept in, based on insurance pay-outs: doctors were now required to show improvement. Improvement = empty beds. The new goal was to get patients diagnosed, medicated, and most importantly, out of the damn clinic as soon as possible, to ensure that the clinic remained funded.
Section Three: Bapu
Born into the privileged Brahmin class, Bapu had polio as a child and therefore wasn't the most appealing bride. Her father purchased a mansion for her, to net her a good husband -- less wealthy than her, but of a good social class. Bapu was an intelligent, scholarly woman who had no interest in marriage, and the marriage was terrible right from the start.
Her husband Rajamani moved his entire family into Bapu's mansion. They treated her like a servant and when they wanted more money, they all moved into a tiny outbuilding (including Bapu) and rented out Bapu's mansion for extra cash. Soon, Bapu developed an interest in religious poetry and Sanskrit scripture; she would spend hours in her prayer room to get away from her husband's family. She wrote obsessively in journals and emulated the 16th-Century poet Mirabai by creating her own bhakti poetry, which was so perfectly written in medieval Tamil that it met a scholar's standards for divine work.
Bapu's condition deteriorated over time. She started running away to join local temples; her children and nephews would hunt her down, or the police would bring her back. She spent periods totally homeless, gaunt, bald-headed, at local temples, where she spent all day worshiping or writing poetry. She was diagnosed with schizophrenia by a Western doctor who treated her with electroshock and allowed her young son to watch.
But in time, when Bapu's kids were older, her son married a young woman who connected with Bapu. They became friends, had conversations about religion. The younger woman would transcribe Bapu's poetry for her, and just generally treated her like a human being. Neighbors revealed that they saw Bapu not as a crazy woman but as a modern saint. The family's POV slowly changed, and when Bapu died, her daughter created a nonprofit to offer counseling to the mentally ill in a caring, culturally sensitive manner that would have benefited Bapu when she was young. Her son had a religious crisis of his own and almost joined a temple where, he later discovered, Bapu had spent some time years before.
Bapu's struggle with mental health was, imo, caused largely by the misogyny she faced both in her home and socially; and by the stress of an unwanted marriage, an unkind family, a crowded home, disenfranchisement. In the end she was healed by simply having someone in the family who empathized with her and wanted to be her friend, and by the acceptance of her town, and eventually, her family too. Similarly, Bapu's adult children were able to find healing by looking into Bapu's journals and going on spiritual journeys of their own: her son studied local temples and took photos of them; her daughter started reading the poetry of Mirabai to understand Bapu better.
Section Three: Naomi
In 2003, Naomi Gaines, a Black single mother, dropped her two twins into the river and then jumped in after them. Her life story leading up to that was harrowing. She'd been raised in the projects without any vegetation, extremely poor, eating wish sandwiches for dinner. Her mom, Florida, was raised in foster care, and Naomi longed to live in that same foster home, a neat three-story brick building where her older sister got to live full-time ever since Florida beat her with an electric cord.
Naomi spent her childhood in homeless shelters, watching her mom get abused by boyfriends, or weathering her mom's cocaine addiction. Naomi became a single mother when she was fairly young, and despite her towering intellect and love of books, she never went to college; she pursued her interest in racial equality through underground art and activist groups. Gradually, her boyfriend noticed symptoms of ... something. To him, it just seemed like Naomi suddenly became an asshole around the time their twins were born. In reality Naomi was checking off all the boxes for post-partum psychosis.
For the next two years she was in and out of psych wards and massively paranoid. She saw racist conspiracies everywhere ... and key to this, she wasn't wrong. Her delusions were just a slight step too far from the reality that Naomi had grown up in. Anyway, her behavior was erratic, and at hospitals she had a tendency to strip naked and run through the halls singing or shouting. On July 4th, the day she threw her twins into the river, she was at a 4th of July festival in Minnesota and she was convinced that all the white people were glowering at her. And hell, it's very possible they were. Gradually, Naomi noticed she was the only Black single mother in sight. She started thinking of a book she'd read recently that talked about American government plots to round up undesirables and exterminate them. Was she an undesirable? Were her children? Naomi became convinced that if she went back to her car, she would be dispatched privately, and her sons would be killed too. What could she do?
She went to the bridge and tossed her babies into the water. One of them, Sincere, drowned. The other, Supreme, was rescued by the same man who rescued Naomi when she jumped.
In prison, Naomi met Khoua Her, a woman who killed six of her children a few years before Naomi did, and who coincidentally lived in the same apartment building Naomi did. Through Khoua, a friendly guard, an empathetic white therapist, and the prison librarian, Naomi gradually built a support system who saw her as intelligent and creative, not just crazy. The man who rescued her visited her in prison after ten years and told her that he'd struggled with depression and paranoia his whole life -- although he was white, his story paralleled Naomi's. His mother suffered a mental breakdown when he was very young and he grew up in foster care. His depression turned a corner, though, when he rescued Naomi and Supreme. She saved his life.
Important points in this section:
American psychiatry is not exactly kind to Black patients. Black patients are believed to have thicker skins, more resilient dispositions; there was a persistent school of thought in the 19th and early 20th century that Black people don't go crazy (unless you free them!). At the same time, culturally, Naomi felt pressure to be a strong Black woman, to just take a nap if she felt bad, to endure everything the world threw at her with an unimpressed facade.
Quote:
Her family took her to the hospital, where she was diagnosed with "adjustment disorder," a label in the DSM that describes a disproportionate emotional response to an identifiable source of stress. Next to the diagnosis, her psychiatrist wrote, "Single mother working two jobs." A social worker wrote, "She believes her depression is due to 'all the hate in the world' and being discouraged about discrimination."
Well, yeah! As Naomi's therapist noted, it was hard to combat Naomi's delusional thinking because it WAS all based in fact. "Yes, you did get a harsher sentence than that white child murderer because of racism. Yes, you were denied freedom when your sentence was up because of racism." And the same was true for most, if not all, of Naomi's disadvantages throughout life. At the same time, the fact that Naomi's delusions were based in real racial injustice meant that she didn't meet Minnesota's criteria for insanity despite a documented history of post-partum psychosis.
And, although she wasn't crazy enough to plead insanity, she WAS considered crazy enough to be denied release when her sentence was up! She was switched from prison to a mental hospital, where luckily she only had to spend a single year.
Quote:
At Chestnut Lodge, psychoanalytic insight was often achieved by upending a person's story: the therapist uncovered the unconscious conflict or fantasy around which the patient's life had always secretly revolved. A biochemical framework for suffering can operate as a similar jolt, prompting a person to let go of an interpretation of the world that has made him or her hopeless. But to have a new explanatory framework foisted onto one's life is not always healing or generative. It can also feel diminishing, a blow to one's identity and worldview.
(After one hospital stay, Naomi's doctor wrote, "She keeps relapsing, cycling. Patient has no insight into her disease." But Naomi knew exactly what was causing her distress. It was racism, a social structure that the doctor was not equipped to deconstruct. That, of course, does not absolve him from the duty to treat each patient as an individual and dig into her thoughts and feelings, her unhealthy framework, her delusions, etc.)
"When it comes to affluent white patients you can take care of moral blame using a biological explanation," said Helena Hansen, psychiatrist and anthropologist at UCLA, about the 'mental illness is purely chemical' theory. "But when it comes to Black and brown and poor patients, that same biological explanation is used to deflect blame away from the societal forces that brought them where they are. Because there is moral blame: the blame of having disinvested in people's communities by doing things like taking away affordable housing or protection for workers."
Section Four: Laura
Laura is the opposite of Naomi. Wealthy, white, descended from Franklin Delano Roosevelt, Laura grew up in one of America's wealthiest communities, attended private school, was the president of her class, and was one of the best squash players her age in the entire country. Extremely high-achieving, Laura got into Harvard where she started experimenting with new identities, as college kids tend to do -- the chill party girl, the bookish perfectionist, the nihilist cynic.
At her debutante ball, however, Laura had a mental break. She started sobbing uncontrollably and felt all alone, so her parents sent her to the prestigious McLean hospital, where her psychiatrist had multiple Ivy League degrees and diagnosed Laura with Bipolar II. He explained the symptoms and the cyclic nature of the disease and started Laura on Prozac.
Soon, the Prozac made Laura sleep, so the doctor prescribed a narcolepsy treatment which gave her tons of energy. Laura's classmates were jealous of how vibrant and functional she was. But on the narcolepsy meds, she couldn't sleep, so her doctor prescribed Ambien, fine-tuning Laura's medications for maximum functionality.
Although she performed great in school and on the squash team, Laura still felt adrift. Her father suggested she spend summer break in the wilderness, so Laura took an Outward Bound trip, where she obsessed over how much trail mix she was getting and worried that instead of returning rejuvenated and in-shape, she would come back worse -- depressed, fat, greasy-haired, less functional than ever. Laura came back and spent $121 on a personal copy of the DSM, which she would study so she could classify her symptoms and report them to her psych.
After she graduated Harvard, Laura didn't really use her degree. She floated from one job to the next, non-permanent, non-career jobs like issuing building permits from a state agency. She drank heavily almost ever night and sometimes got sexually involved with men, but never enjoyed the encounters.
"She interpreted each disappointment as the start of a black mood that would never end. She seemed to be caught in a loop, depressed over the fact that was entering a phase of depression. The diagnosis reflected her state of mind, but it also influenced her expectations for herself."
After a suicide attempt, Laura returned to McLean where a new doctor diagnosed her with Borderline Personality Disorder. Laura's world was shaken. Bipolar had seemed like a perfect fit. Now she had a new, different list of symptoms to watch out for, and it felt like an ill-fitting glove. The women at her support group didn't remind her of herself at all. They had very different, traumatic upbringings, and they didn't match Laura's rule-following people-pleaser personality.
(As noted in this book, BPD emerged as a way to classify patients whose symptoms just didn't fit any other diagnosis. In 1980 the DSM described is "more commonly diagnosed in women" and listed stereotypically feminine traits as symptoms. Sociologist Janet Wirth-Cauchon described BPD as the new female malady of late modern society; and another book I read, I think "Bright Red Scream", presented research that showed BPD was commonly viewed as an easy label for annoying female patients who would probably be diagnosed with PTSD instead if they were male)
Some months later, Laura wandered into a bookstore and spotted Robert Whitaker's "Anatomy of an Epidemic", which I reviewed on my old blog. This anti-psych book made Laura question whether she really had bipolar or BPD at all. In fact, what had she experienced as an adolescent, other than the routine stress of a perfectionist kid at Harvard for freshman year? Why had she been put on all these different meds, just to treat the side effects of other meds?
Laura told her psych she wanted to ease off her medications. She began a slow but alarming withdrawal process, where she experienced violent mood swings unlike anything she'd ever experienced before, medicated or not. Online support groups informed her that this was actually normal for people slowly going off psych meds, but for most people, these "neuro-emotions" faded with time, which was true for Laura. And when she got off antidepressants, her sexuality emerged for the first time in her whole life.
"Once the chemical-imbalance theory became popular, mental health became synonymous with an absence of symptoms, rather than with a return to a person's baseline, her mood or personality before and between periods of crisis. Dorian Deshauer, a psychiatrist and historian at the University of Toronto, told me, 'Once you abandon the idea of the personal baseline, it becomes possible to think of emotional suffering as relapse -- instead of something to be expected from an individual's way of being in the world.'"
What Laura experienced as a young adult was the typical anxiety of a high-achieving kid out on her own for the first time. Her debutante ball, the symbolic entrance into adulthood, was her trigger. She wasn't ready to be alone; she still needed support from her parents and didn't believe she should ask for it, because she was so damn high-achieving! But with the bipolar diagnosis, this normal period of anxiety became a symptom, and any time Laura went on a bad date or landed an unsatisfying job after that, she classified her normal feelings of sadness or displeasure as symptoms of a depressive phase.
The whole time, Laura's psychiatrists were impressed by her insight. After all, she agreed with everything they said XD
A side note on antidepressants:
This section notes that Prozac and Zoloft are largely marketed and prescribed to women. Both meds have a common side effect: repressing sexuality. Notably, our gender norms in the US are that men have sexual desire, but women do not. Aviv spends a small amount of time musing on this, which I really enjoyed -- and quotes Audrey Bahrick, a psychologist at the University of Iowa, who said she sees thousands of college students each year, many of whom have been taking SSRIs like Prozac and Zoloft since adolescence.
"I seem to have the expectation that young people would be quite distressed about the sexual side effects," said Bahrick, "but my observation clinically is that these young people don't yet know what sexuality really means or why it is such a driving force."
Part 5: Rachel and Hava, again
Rachel first tells us about her experience with Lexapro. As a young adult, Rachel worked for the New Yorker and noticed she was feeling some excess self-consciousness and anxiety at work and social gatherings. She felt like everyone else was more genuine, more comfortably human and graceful, than she was. At therapy, her psych suggested that she try antidepressants for a short period, six months, to help her accept that she can't control or know what impression she's made on other people.
Rachel responded phenomenally to the medication. She suddenly regained her curiosity and perspective at work, her ability to assess interviews and really hear what the person was telling her instead of warping the story to fit her narrative (easy trap for journalists to fall into; my old editor was like this, and often seemed not to even HEAR good story leads because she was so focused on manipulating the subject to fit what she THOUGHT the story should be). Rachel also had a new interest in social life and found that she had so much fun she didn't care if she was making a fool of herself. She strengthened her relationship with her boyfriend, got married, and when her six months were up, reluctantly decided to quit.
She lasted about two weeks. During that time, she was so massively depressed that it scared her. She was supposed to go back to normal after Lexapro! Was THIS her normal? Was this her real baseline -- massive depression and anxiety, the six-year-old institutionalized for anorexia... Rachel went back on Lexapro. She planned for a baby. When she got pregnant, she went off Lexapro and suddenly she was horrified. Pregnant?! Why??? She didn't want a baby! Her doctor advised her to go back on, and to her relief, Rachel's horror and desire for an abortion faded. She wanted her baby again.
Now, ten years later, Rachel understands that her massive depression was in fact just Lexapro withdrawal. But she's still taking Lexapro, because she genuinely likes the person she is on 10mg of Lexapro more than the person she is off. On Lexapro, she's more patient, more kind, better equipped to parent her children and handle her workload. She also has a healthy understanding that her baseline is NOT the depressed, incompetent person she became for those two weeks.
Quote:
The bioethicist Carl Elliott writes that for some people antidepressants do not address an inner psychic state so much as "an incongruity between the self and external structures of meaning -- a lack of fit between the way you are the way you are expected to be." Elliott wonders if "at least part of the nagging worry about Prozac and its ilk is that for all the good they do, the ills that they treat are part and parcel of the lonely, forgetful, unbearably sad place where we live."
But there is a difference, of course, between lonely sadness and the kinds of deprivations that defined Naomi's history -- and the cognitive dissonance when those wrongs were not acknowledged, the sense that reality could not be trusted. Yet psychiatry approaches these sets of troubles in the same way, adopting a position of neutrality that can feel violent. What can a psychiatrist say, Elliott asks, to "an alienated Sisyphus as he pushes the boulder up the mountain? That he would push the boulder more enthusiastically, more creatively, more insightfully, if he were on Prozac?"
Now, about Hava:
As she began researching this book, Rachel got in touch with her old doctors from when she was six. She learned that Hava had died just ten weeks earlier, after a lifetime battling anorexia. Hava's journals showed a tremendous amount of insight. She knew the ins and outs of her disease, but that didn't mean she knew how to stop the symptoms from working.
As she got older, Hava had a son and gave him up for adoption. She met a man who struggled with mental illness too and they moved in together, helping each other cope. In her early thirties, Hava was possibly taking a turn for the better. But she had struggled with bulimia for years, and it weakened her greatly, and one night she died in her sleep.
What's the difference between Rachel and Hava? Why did one of them struggle with anorexia all her life, eventually dying from it, when the other made a total recovery within weeks and never relapsed? They were both Jewish, with strikingly similar physical appearances. Both wealthy, with similar families. Possibly the difference is that Rachel was so young -- still developing, changing too quickly to become set in her ways; or maybe because her parents pulled her out of the ward before she could latch onto anorexia as an identity.
Honestly, Rachel doesn't know 🤷♂️
My thoughts:
I lean a little anti-psych, but I know meds have definitely helped friends of mine, so I appreciated Aviv's nuanced view and her willingness to examine differing POVs. I was, like Ray, a hardline "mental illness is PHYSICAL! I just need the right meds and I'll be fixed!" type of person. And like Laura I was a people-pleaser and willing to go along with whatever my psychs said. I cycled between dozens of different prescriptions.
But the meds didn't affect me at all -- not a good responder to antidepressants. And the depression just got worse. I believed it was a chemical imbalance that would affect me for my entire life, and I was given a series of diagnoses that all indicated I was severely, irrevocably ill. But then...
I left the military. I left my physically abusive spouse. I had $0 in my bank account, no car, and no home. So, homeless, I moved to a new state thousands of miles away, specifically to a little country home surrounded by nature, with my family close by. The owner of the country house was extremely generous and let me stay there rent-free so long as I fixed it up a little. The climate was entirely different from where I'd been, and much more pleasant imo, with four seasons and tons of greenery. I got a new job in a field I enjoyed, low-pressure, no dress code, short hours and decent pay for the region; money was a little tight but not paying rent was a huge help, and I was able to pursue cheap hobbies like hiking, nature stuff, mushrooms/mycology, animal tracking, whittling, harmonica playing, writing -- stuff that got me out into nature, ignited the music center of my brain, and kept my mind occupied at night when I couldn't sleep.
And my lifelong mental illnesses evaporated. It's been almost a decade now, and I started from a good baseline, but I just get better every year -- more happy all around, able to take on new hobbies and interests while maintaining old passions, building solid friendships. Because of this experience, it's very easy for me to fall into the idea that psychiatry is bad for everyone, that meds are useless, that there is no physical cause for mental illness -- but obviously, it's not that simple, and for plenty of people, what I did just plain wouldn't work. What I did just plain isn't possible. And the correct route would in fact be psychiatry, with meds.
Well, the long and short of it is, I'm not in the psychiatry field -- if I were, I'd probably have a more concrete opinion on this book. As it is, I'm a layman, and I found it immensely readable, with moving case studies and some thought-provoking material that will make for great conversation with my friends, especially re: baseline personality, "insight", socioeconomic factors in mental illness, insanity pleas. It's good stuff.
Section 1: Rachel and Hava
At the age of six, author Rachel Aviv was institutionalized for anorexia, making her possibly the youngest-ever anorexia diagnosis (so far as she can tell). When she joined the ward, Rachel's only anorexic behavior was that she wouldn't eat, and she had gotten the idea from Yom Kippur, where she learned for the first time that she could say no to food.
But on the ward, Rachel met an older girl named Hava, also Jewish, with an eerie resemblance to Rachel and a keen intellect. Hava taught Rachel how to REALLY be anorexic: how to count calories, do jumping jacks at night to make up for your excess fat, compare yourself to other girls, and burn calories by only sitting down when it was time for bed. Rachel's parents noticed with frustration that their daughter was getting worse at the ward, but Rachel made a sudden and complete recovery one day when she was just ... hungry. And suddenly didn't care about not eating.
Cured, Rachel left the ward and never returned. In this section, she notes that hunger strikes are one of very few options children have to make their displeasure known. In Sweden, children from former Soviet and Yugoslav states were diagnosed with "resignation syndrome", where after being denied asylum, they took to their beds, stopped talking, and refused to eat. Refugees from the same countries, who settled in different Nordic regions, did not suffer from this syndrome at all. Upon interviewing these kids and their families, Rachel learned that many of them knew other people with resignation syndrome before they themselves showed symptoms.
"My conversations with families and doctors in Sweden made me reconsider my early experience with anorexia," Rachel said. "Something about the mute, fasting children in Sweden felt familiar to me. For a child, solipsistic by nature, there are limits to the ways that despair can be communicated. Culture shapes the scripts that expressions of distress will follow. In both anorexia and resignation syndrome, children embody anger and a sense of powerlessness by refusing food, one of the few methods of protest available to them. Experts tell these children that they are behaving in a recognizable way that has a label. The children then make adjustments, conscious and unconscious, to the way they've been classified. Over time, a willed pattern of behavior becomes increasingly involuntary and ingrained.
"The philosopher Ian Hacking uses the term 'looping effect' to describe the way that people get caught in self-fulfilling stories about illness. A new diagnosis can change 'the space of possibilities for personhood', he writes. 'We make ourselves in our own scientific image of the kinds of people it is possible to be.'"
Section Two: Ray
Through the book, there's a recurring theme of "insight."
"In the starkest terms, insight measures the degree to which a patient agrees with his or her doctor's interpretation," Aviv says.
Ray Osheroff was a successful doctor, married with two kids, who owned three dialysis clinics when he had a mental breakdown. Within a few years, Ray was divorced, had no contact with his sons, and was walking eight hours a day, with blackened flesh on his toes from pacing so much. His business partner convinced him to check into the empathetic and care-oriented Chestnut Lodge, where therapists formed familial relationships with patients and encouraged them to dig deep into the roots of their problems for better understanding.
Ray was a problematic patient. Before entering Chestnut Lodge, he'd read a book about then-new antidepressants, and he firmly believed this was the way out of his mental break. But at Chestnut Lodge, medication was verboten. Ray and his doctors had a fundamental disagreement in how to treat his illness, and doctors noted that Ray lacked insight into his problems, and even classified his belief that depression was rooted in the brain as a "possible delusion".
"He kept talking about his brain, as thought he might have some thoughts that there was something wrong with his brain in a physical sense," one doctor noted.
Eventually, Ray transferred to a pro-medication clinic where he was prescribed antidepressants. He instantly felt better. Food no longer tasted rotten, like it had been soaked in saltwater. Sex had its appeal. His passion for music came roaring back, and doctors noted that his famous kindness and generosity had returned. Ray felt he was fixed and tried to rejoin normal life, but his family wasn't so convinced. For the rest of his life, Ray's sons were exasperated with his fixation on his time at Chestnut Lodge, his compulsion to write and revise memoirs of his time there, his neurotic drive to repeat the story of how he ended up there over and over again. Ray struggled to keep a job and even wound up in trouble for insurance fraud; at his granddaughter's birth, he ignored the baby and badgered his son about reading the new revised edition of Ray's memoirs.
Ray's sons believed that their father's nervous breakdown stemmed from a simple problem: he was a talented musician, he played beautifully, and he longed to be a professional ... but his dad pushed him to become a doctor instead. No matter how successful he was as a doctor, it would never satisfy Ray, because in his heart he wanted to be a musician. Since he could never admit that, Ray insisted the problem was purely physical, and that antidepressants had totally cured him.
Quote:
Ray's friend Andy Seewald told me that Ray often compared himself to Ahab in Moby-Dick. "The Lodge was his white wale," he said. "He was searching for the thing that had unmanned him."
The Chestnut Lodge shut down in the 90s thanks in part to a long-term study that followed 400+ patients treated between 1950-1975. Only a third of schizophrenic patients had improved or recovered, roughly the same percentage of patients who recovered in any other treatment setting. Basically, Chestnut Lodge's family-style, empathetic method couldn't be shown to have any better impact on patients than pure medication or pure electroshock or pure neglect.
Unfortunately, as joints like Chestnut Lodge shut down, a new model swept in, based on insurance pay-outs: doctors were now required to show improvement. Improvement = empty beds. The new goal was to get patients diagnosed, medicated, and most importantly, out of the damn clinic as soon as possible, to ensure that the clinic remained funded.
Section Three: Bapu
Born into the privileged Brahmin class, Bapu had polio as a child and therefore wasn't the most appealing bride. Her father purchased a mansion for her, to net her a good husband -- less wealthy than her, but of a good social class. Bapu was an intelligent, scholarly woman who had no interest in marriage, and the marriage was terrible right from the start.
Her husband Rajamani moved his entire family into Bapu's mansion. They treated her like a servant and when they wanted more money, they all moved into a tiny outbuilding (including Bapu) and rented out Bapu's mansion for extra cash. Soon, Bapu developed an interest in religious poetry and Sanskrit scripture; she would spend hours in her prayer room to get away from her husband's family. She wrote obsessively in journals and emulated the 16th-Century poet Mirabai by creating her own bhakti poetry, which was so perfectly written in medieval Tamil that it met a scholar's standards for divine work.
Bapu's condition deteriorated over time. She started running away to join local temples; her children and nephews would hunt her down, or the police would bring her back. She spent periods totally homeless, gaunt, bald-headed, at local temples, where she spent all day worshiping or writing poetry. She was diagnosed with schizophrenia by a Western doctor who treated her with electroshock and allowed her young son to watch.
But in time, when Bapu's kids were older, her son married a young woman who connected with Bapu. They became friends, had conversations about religion. The younger woman would transcribe Bapu's poetry for her, and just generally treated her like a human being. Neighbors revealed that they saw Bapu not as a crazy woman but as a modern saint. The family's POV slowly changed, and when Bapu died, her daughter created a nonprofit to offer counseling to the mentally ill in a caring, culturally sensitive manner that would have benefited Bapu when she was young. Her son had a religious crisis of his own and almost joined a temple where, he later discovered, Bapu had spent some time years before.
Bapu's struggle with mental health was, imo, caused largely by the misogyny she faced both in her home and socially; and by the stress of an unwanted marriage, an unkind family, a crowded home, disenfranchisement. In the end she was healed by simply having someone in the family who empathized with her and wanted to be her friend, and by the acceptance of her town, and eventually, her family too. Similarly, Bapu's adult children were able to find healing by looking into Bapu's journals and going on spiritual journeys of their own: her son studied local temples and took photos of them; her daughter started reading the poetry of Mirabai to understand Bapu better.
Section Three: Naomi
In 2003, Naomi Gaines, a Black single mother, dropped her two twins into the river and then jumped in after them. Her life story leading up to that was harrowing. She'd been raised in the projects without any vegetation, extremely poor, eating wish sandwiches for dinner. Her mom, Florida, was raised in foster care, and Naomi longed to live in that same foster home, a neat three-story brick building where her older sister got to live full-time ever since Florida beat her with an electric cord.
Naomi spent her childhood in homeless shelters, watching her mom get abused by boyfriends, or weathering her mom's cocaine addiction. Naomi became a single mother when she was fairly young, and despite her towering intellect and love of books, she never went to college; she pursued her interest in racial equality through underground art and activist groups. Gradually, her boyfriend noticed symptoms of ... something. To him, it just seemed like Naomi suddenly became an asshole around the time their twins were born. In reality Naomi was checking off all the boxes for post-partum psychosis.
For the next two years she was in and out of psych wards and massively paranoid. She saw racist conspiracies everywhere ... and key to this, she wasn't wrong. Her delusions were just a slight step too far from the reality that Naomi had grown up in. Anyway, her behavior was erratic, and at hospitals she had a tendency to strip naked and run through the halls singing or shouting. On July 4th, the day she threw her twins into the river, she was at a 4th of July festival in Minnesota and she was convinced that all the white people were glowering at her. And hell, it's very possible they were. Gradually, Naomi noticed she was the only Black single mother in sight. She started thinking of a book she'd read recently that talked about American government plots to round up undesirables and exterminate them. Was she an undesirable? Were her children? Naomi became convinced that if she went back to her car, she would be dispatched privately, and her sons would be killed too. What could she do?
She went to the bridge and tossed her babies into the water. One of them, Sincere, drowned. The other, Supreme, was rescued by the same man who rescued Naomi when she jumped.
In prison, Naomi met Khoua Her, a woman who killed six of her children a few years before Naomi did, and who coincidentally lived in the same apartment building Naomi did. Through Khoua, a friendly guard, an empathetic white therapist, and the prison librarian, Naomi gradually built a support system who saw her as intelligent and creative, not just crazy. The man who rescued her visited her in prison after ten years and told her that he'd struggled with depression and paranoia his whole life -- although he was white, his story paralleled Naomi's. His mother suffered a mental breakdown when he was very young and he grew up in foster care. His depression turned a corner, though, when he rescued Naomi and Supreme. She saved his life.
Important points in this section:
American psychiatry is not exactly kind to Black patients. Black patients are believed to have thicker skins, more resilient dispositions; there was a persistent school of thought in the 19th and early 20th century that Black people don't go crazy (unless you free them!). At the same time, culturally, Naomi felt pressure to be a strong Black woman, to just take a nap if she felt bad, to endure everything the world threw at her with an unimpressed facade.
Quote:
Her family took her to the hospital, where she was diagnosed with "adjustment disorder," a label in the DSM that describes a disproportionate emotional response to an identifiable source of stress. Next to the diagnosis, her psychiatrist wrote, "Single mother working two jobs." A social worker wrote, "She believes her depression is due to 'all the hate in the world' and being discouraged about discrimination."
Well, yeah! As Naomi's therapist noted, it was hard to combat Naomi's delusional thinking because it WAS all based in fact. "Yes, you did get a harsher sentence than that white child murderer because of racism. Yes, you were denied freedom when your sentence was up because of racism." And the same was true for most, if not all, of Naomi's disadvantages throughout life. At the same time, the fact that Naomi's delusions were based in real racial injustice meant that she didn't meet Minnesota's criteria for insanity despite a documented history of post-partum psychosis.
And, although she wasn't crazy enough to plead insanity, she WAS considered crazy enough to be denied release when her sentence was up! She was switched from prison to a mental hospital, where luckily she only had to spend a single year.
Quote:
At Chestnut Lodge, psychoanalytic insight was often achieved by upending a person's story: the therapist uncovered the unconscious conflict or fantasy around which the patient's life had always secretly revolved. A biochemical framework for suffering can operate as a similar jolt, prompting a person to let go of an interpretation of the world that has made him or her hopeless. But to have a new explanatory framework foisted onto one's life is not always healing or generative. It can also feel diminishing, a blow to one's identity and worldview.
(After one hospital stay, Naomi's doctor wrote, "She keeps relapsing, cycling. Patient has no insight into her disease." But Naomi knew exactly what was causing her distress. It was racism, a social structure that the doctor was not equipped to deconstruct. That, of course, does not absolve him from the duty to treat each patient as an individual and dig into her thoughts and feelings, her unhealthy framework, her delusions, etc.)
"When it comes to affluent white patients you can take care of moral blame using a biological explanation," said Helena Hansen, psychiatrist and anthropologist at UCLA, about the 'mental illness is purely chemical' theory. "But when it comes to Black and brown and poor patients, that same biological explanation is used to deflect blame away from the societal forces that brought them where they are. Because there is moral blame: the blame of having disinvested in people's communities by doing things like taking away affordable housing or protection for workers."
Section Four: Laura
Laura is the opposite of Naomi. Wealthy, white, descended from Franklin Delano Roosevelt, Laura grew up in one of America's wealthiest communities, attended private school, was the president of her class, and was one of the best squash players her age in the entire country. Extremely high-achieving, Laura got into Harvard where she started experimenting with new identities, as college kids tend to do -- the chill party girl, the bookish perfectionist, the nihilist cynic.
At her debutante ball, however, Laura had a mental break. She started sobbing uncontrollably and felt all alone, so her parents sent her to the prestigious McLean hospital, where her psychiatrist had multiple Ivy League degrees and diagnosed Laura with Bipolar II. He explained the symptoms and the cyclic nature of the disease and started Laura on Prozac.
Soon, the Prozac made Laura sleep, so the doctor prescribed a narcolepsy treatment which gave her tons of energy. Laura's classmates were jealous of how vibrant and functional she was. But on the narcolepsy meds, she couldn't sleep, so her doctor prescribed Ambien, fine-tuning Laura's medications for maximum functionality.
Although she performed great in school and on the squash team, Laura still felt adrift. Her father suggested she spend summer break in the wilderness, so Laura took an Outward Bound trip, where she obsessed over how much trail mix she was getting and worried that instead of returning rejuvenated and in-shape, she would come back worse -- depressed, fat, greasy-haired, less functional than ever. Laura came back and spent $121 on a personal copy of the DSM, which she would study so she could classify her symptoms and report them to her psych.
After she graduated Harvard, Laura didn't really use her degree. She floated from one job to the next, non-permanent, non-career jobs like issuing building permits from a state agency. She drank heavily almost ever night and sometimes got sexually involved with men, but never enjoyed the encounters.
"She interpreted each disappointment as the start of a black mood that would never end. She seemed to be caught in a loop, depressed over the fact that was entering a phase of depression. The diagnosis reflected her state of mind, but it also influenced her expectations for herself."
After a suicide attempt, Laura returned to McLean where a new doctor diagnosed her with Borderline Personality Disorder. Laura's world was shaken. Bipolar had seemed like a perfect fit. Now she had a new, different list of symptoms to watch out for, and it felt like an ill-fitting glove. The women at her support group didn't remind her of herself at all. They had very different, traumatic upbringings, and they didn't match Laura's rule-following people-pleaser personality.
(As noted in this book, BPD emerged as a way to classify patients whose symptoms just didn't fit any other diagnosis. In 1980 the DSM described is "more commonly diagnosed in women" and listed stereotypically feminine traits as symptoms. Sociologist Janet Wirth-Cauchon described BPD as the new female malady of late modern society; and another book I read, I think "Bright Red Scream", presented research that showed BPD was commonly viewed as an easy label for annoying female patients who would probably be diagnosed with PTSD instead if they were male)
Some months later, Laura wandered into a bookstore and spotted Robert Whitaker's "Anatomy of an Epidemic", which I reviewed on my old blog. This anti-psych book made Laura question whether she really had bipolar or BPD at all. In fact, what had she experienced as an adolescent, other than the routine stress of a perfectionist kid at Harvard for freshman year? Why had she been put on all these different meds, just to treat the side effects of other meds?
Laura told her psych she wanted to ease off her medications. She began a slow but alarming withdrawal process, where she experienced violent mood swings unlike anything she'd ever experienced before, medicated or not. Online support groups informed her that this was actually normal for people slowly going off psych meds, but for most people, these "neuro-emotions" faded with time, which was true for Laura. And when she got off antidepressants, her sexuality emerged for the first time in her whole life.
"Once the chemical-imbalance theory became popular, mental health became synonymous with an absence of symptoms, rather than with a return to a person's baseline, her mood or personality before and between periods of crisis. Dorian Deshauer, a psychiatrist and historian at the University of Toronto, told me, 'Once you abandon the idea of the personal baseline, it becomes possible to think of emotional suffering as relapse -- instead of something to be expected from an individual's way of being in the world.'"
What Laura experienced as a young adult was the typical anxiety of a high-achieving kid out on her own for the first time. Her debutante ball, the symbolic entrance into adulthood, was her trigger. She wasn't ready to be alone; she still needed support from her parents and didn't believe she should ask for it, because she was so damn high-achieving! But with the bipolar diagnosis, this normal period of anxiety became a symptom, and any time Laura went on a bad date or landed an unsatisfying job after that, she classified her normal feelings of sadness or displeasure as symptoms of a depressive phase.
The whole time, Laura's psychiatrists were impressed by her insight. After all, she agreed with everything they said XD
A side note on antidepressants:
This section notes that Prozac and Zoloft are largely marketed and prescribed to women. Both meds have a common side effect: repressing sexuality. Notably, our gender norms in the US are that men have sexual desire, but women do not. Aviv spends a small amount of time musing on this, which I really enjoyed -- and quotes Audrey Bahrick, a psychologist at the University of Iowa, who said she sees thousands of college students each year, many of whom have been taking SSRIs like Prozac and Zoloft since adolescence.
"I seem to have the expectation that young people would be quite distressed about the sexual side effects," said Bahrick, "but my observation clinically is that these young people don't yet know what sexuality really means or why it is such a driving force."
Part 5: Rachel and Hava, again
Rachel first tells us about her experience with Lexapro. As a young adult, Rachel worked for the New Yorker and noticed she was feeling some excess self-consciousness and anxiety at work and social gatherings. She felt like everyone else was more genuine, more comfortably human and graceful, than she was. At therapy, her psych suggested that she try antidepressants for a short period, six months, to help her accept that she can't control or know what impression she's made on other people.
Rachel responded phenomenally to the medication. She suddenly regained her curiosity and perspective at work, her ability to assess interviews and really hear what the person was telling her instead of warping the story to fit her narrative (easy trap for journalists to fall into; my old editor was like this, and often seemed not to even HEAR good story leads because she was so focused on manipulating the subject to fit what she THOUGHT the story should be). Rachel also had a new interest in social life and found that she had so much fun she didn't care if she was making a fool of herself. She strengthened her relationship with her boyfriend, got married, and when her six months were up, reluctantly decided to quit.
She lasted about two weeks. During that time, she was so massively depressed that it scared her. She was supposed to go back to normal after Lexapro! Was THIS her normal? Was this her real baseline -- massive depression and anxiety, the six-year-old institutionalized for anorexia... Rachel went back on Lexapro. She planned for a baby. When she got pregnant, she went off Lexapro and suddenly she was horrified. Pregnant?! Why??? She didn't want a baby! Her doctor advised her to go back on, and to her relief, Rachel's horror and desire for an abortion faded. She wanted her baby again.
Now, ten years later, Rachel understands that her massive depression was in fact just Lexapro withdrawal. But she's still taking Lexapro, because she genuinely likes the person she is on 10mg of Lexapro more than the person she is off. On Lexapro, she's more patient, more kind, better equipped to parent her children and handle her workload. She also has a healthy understanding that her baseline is NOT the depressed, incompetent person she became for those two weeks.
Quote:
The bioethicist Carl Elliott writes that for some people antidepressants do not address an inner psychic state so much as "an incongruity between the self and external structures of meaning -- a lack of fit between the way you are the way you are expected to be." Elliott wonders if "at least part of the nagging worry about Prozac and its ilk is that for all the good they do, the ills that they treat are part and parcel of the lonely, forgetful, unbearably sad place where we live."
But there is a difference, of course, between lonely sadness and the kinds of deprivations that defined Naomi's history -- and the cognitive dissonance when those wrongs were not acknowledged, the sense that reality could not be trusted. Yet psychiatry approaches these sets of troubles in the same way, adopting a position of neutrality that can feel violent. What can a psychiatrist say, Elliott asks, to "an alienated Sisyphus as he pushes the boulder up the mountain? That he would push the boulder more enthusiastically, more creatively, more insightfully, if he were on Prozac?"
Now, about Hava:
As she began researching this book, Rachel got in touch with her old doctors from when she was six. She learned that Hava had died just ten weeks earlier, after a lifetime battling anorexia. Hava's journals showed a tremendous amount of insight. She knew the ins and outs of her disease, but that didn't mean she knew how to stop the symptoms from working.
As she got older, Hava had a son and gave him up for adoption. She met a man who struggled with mental illness too and they moved in together, helping each other cope. In her early thirties, Hava was possibly taking a turn for the better. But she had struggled with bulimia for years, and it weakened her greatly, and one night she died in her sleep.
What's the difference between Rachel and Hava? Why did one of them struggle with anorexia all her life, eventually dying from it, when the other made a total recovery within weeks and never relapsed? They were both Jewish, with strikingly similar physical appearances. Both wealthy, with similar families. Possibly the difference is that Rachel was so young -- still developing, changing too quickly to become set in her ways; or maybe because her parents pulled her out of the ward before she could latch onto anorexia as an identity.
Honestly, Rachel doesn't know 🤷♂️
My thoughts:
I lean a little anti-psych, but I know meds have definitely helped friends of mine, so I appreciated Aviv's nuanced view and her willingness to examine differing POVs. I was, like Ray, a hardline "mental illness is PHYSICAL! I just need the right meds and I'll be fixed!" type of person. And like Laura I was a people-pleaser and willing to go along with whatever my psychs said. I cycled between dozens of different prescriptions.
But the meds didn't affect me at all -- not a good responder to antidepressants. And the depression just got worse. I believed it was a chemical imbalance that would affect me for my entire life, and I was given a series of diagnoses that all indicated I was severely, irrevocably ill. But then...
I left the military. I left my physically abusive spouse. I had $0 in my bank account, no car, and no home. So, homeless, I moved to a new state thousands of miles away, specifically to a little country home surrounded by nature, with my family close by. The owner of the country house was extremely generous and let me stay there rent-free so long as I fixed it up a little. The climate was entirely different from where I'd been, and much more pleasant imo, with four seasons and tons of greenery. I got a new job in a field I enjoyed, low-pressure, no dress code, short hours and decent pay for the region; money was a little tight but not paying rent was a huge help, and I was able to pursue cheap hobbies like hiking, nature stuff, mushrooms/mycology, animal tracking, whittling, harmonica playing, writing -- stuff that got me out into nature, ignited the music center of my brain, and kept my mind occupied at night when I couldn't sleep.
And my lifelong mental illnesses evaporated. It's been almost a decade now, and I started from a good baseline, but I just get better every year -- more happy all around, able to take on new hobbies and interests while maintaining old passions, building solid friendships. Because of this experience, it's very easy for me to fall into the idea that psychiatry is bad for everyone, that meds are useless, that there is no physical cause for mental illness -- but obviously, it's not that simple, and for plenty of people, what I did just plain wouldn't work. What I did just plain isn't possible. And the correct route would in fact be psychiatry, with meds.
Well, the long and short of it is, I'm not in the psychiatry field -- if I were, I'd probably have a more concrete opinion on this book. As it is, I'm a layman, and I found it immensely readable, with moving case studies and some thought-provoking material that will make for great conversation with my friends, especially re: baseline personality, "insight", socioeconomic factors in mental illness, insanity pleas. It's good stuff.
no subject
Date: 2023-03-13 10:27 pm (UTC)no subject
Date: 2023-03-15 05:04 pm (UTC)no subject
Date: 2023-03-15 07:06 pm (UTC)