My Lovely Wife in the Psych Ward

By Mark Lukach.   January 13, 2015

In Pacific Standard

http://www.psmag.com/health-and-behavior/lovely-wife-psych-ward-95567

Excerpts relating to the anti-psychiatry movement . . .

The book, R.D. Laing’s The Divided Self: An Existential Study in Sanity and Madness, was my introduction to anti-psychiatry. The book was published in 1960, when Laing was just 33 years old and drug treatment was becoming a dominant practice in the treatment of mental illness. Laing clearly didn’t like the shift. He didn’t even like the assumption that psychosis was a disease that needed to be cured. In an argument that in some ways predicted the contemporary neurodiversity movement, Laing wrote, “The cracked mind of the schizophrenic may let in light which does not enter the intact minds of many sane people whose minds are closed.” To him the strange behavior of psychotics was not de facto bad. Perhaps they were making legitimate attempts to communicate thoughts and feelings that conventional society did not permit? Could it be that family members, as well as doctors, defined certain people as crazy in order to discredit them? Seen from Laing’s view, the construction of mental illness is demeaning, even dehumanizing—a power grab by the supposed normals. I found The Divided Self extremely painful to read. Among its most searing lines for me: “I have never known a schizophrenic who could say he was loved.”

Laing’s book helped spawn the Mad Pride movement, which modeled itself on gay pride, reclaiming the word mad as a positive identifier instead of a slur. Mad Pride came out of the psychiatric survivor movement, with its goal of taking mental health treatment decisions out of the hands of doctors and well-intentioned caregivers and putting those decisions into the hands of patients. I admired all of those rights movements—every person deserves acceptance and self-determination, as far as I’m concerned—but Laing’s words hurt. I’d made loving Giulia the center of my life. I put her recovery above all else for almost a year. I wasn’t ashamed of Giulia. Just the opposite: I was proud of her and how she fought her illness. If there was a green or orange psychosis-supporter ribbon, I would have worn it.

Yet Laing ripped through a conception I had of myself that I held dear: that I was a good husband. Laing died in 1989, more than 20 years before I picked up his book, so who knows what he really would have thought. His ideas about mental health and its treatment could have shifted with the times. But in my admittedly sensitive state, I felt Laing saying: Patients are good. Doctors are bad. Family members botch things up by listening to physicians and becoming bumbling accomplices in the crime of psychiatry. And I was an accessory, conspiring to force Giulia to take medication against her will that made her distant, unhappy, and slow, and that silenced her psychotic thoughts. That same medication enabled Giulia to remain alive, so everything else was secondary, as far as I was concerned. I never doubted the rightness of my motives. From the beginning, I’d cast myself in the role of Giulia’s self-effacing caregiver—not a saint, but definitely a guy working on the side of good. Laing made me feel like I was her tormentor.

Giulia’s second hospitalization was even harder than the first. On the quiet nights I spent at home, after Jonas fell asleep, the reality hit: This isn’t going away. In the psych ward Giulia took to collecting leaves and scattering them throughout her room. When I’d visit, she’d unleash a flood of paranoid questions and accusations, then bend down and scoop up the leaves and inhale, as if the smell might anchor her thoughts against floating away. My mind raced, too. Laing’s ideas raised so many questions. Should Giulia even be in the hospital? Was this an actual illness? Did the pills make things better or worse? All these queries piled self-doubt on top of my sadness and fear. If Giulia had a disease like cancer or diabetes, she’d guide her own treatment; because she was mentally ill, she didn’t. Nobody even put much stock in Giulia’s opinions. And psychiatry is not a field with rock-hard data behind its diagnoses and treatment plans. Some of the most prominent leaders in psychiatry have recently lambasted their own discipline for its inadequate research basis. In 2013, Thomas Insel, the director of the National Institute of Mental Health, criticized the Diagnostic and Statistical Manual of Mental Disorders, psychiatry’s so-called bible, for lacking scientific rigor—in particular, for defining disorders based on symptoms instead of objective measures. “In the rest of medicine,” he said, this would be considered antiquated and insufficient, “equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever.” Allen Frances, who oversaw the 1994 edition of the DSM and who later wrote the book Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life, put it even more bluntly: “There is no definition of a mental disorder. It’s bullshit.”

Still, Giulia’s doctors, parents, and I made decisions for her. She continued to hate the pills we all forced her to take, and she emerged from her second psychosis much the same way she did her first: with the aid of meds. She returned home after 33 days, still intermittently psychotic but mostly under control. She didn’t talk about the devil or the universe anymore, but, once again, she was barely there, lost in depression and a chemical fog.

During her recovery Giulia attended group therapy, and sometimes her friends from that group came over to our place. They’d sit on our couch and commiserate about how much they hated their pills, their doctors, and their diagnoses. This made me uncomfortable, and not just because they nicknamed me the Medicine Nazi. Their conversations were informed by the anti-psychiatry movement, and that movement is founded on the idea of patients supporting patients—or psychiatric survivors supporting psychiatric survivors, as they call themselves—regardless of whether those survivors are good influences or not. This terrified me. I feared Giulia’s recovery being taken out of the hands of sane, compassionate people—i.e., her medical team, family, and me—and given over to people like herself, who might be psychotic or suicidal.

Unsure how to deal with this and frankly exhausted by our regular fights over taking her prescriptions and seeing her doctor, I called Sascha Altman DuBrul, one of the founders of the Icarus Project, an alternative medical health organization that “seeks to overcome the limitations of a world determined to label, categorize, and sort human behavior.” The Icarus Project categorizes what most people consider mental illness as “the space between brilliance and madness.” I didn’t feel great picking up the phone. I wasn’t seeing the brilliant side of Giulia’s behaviors, and I wasn’t eager for more judgment and guilt. But I needed a new way to think about our struggles. DuBrul instantly put me at ease. He started by arguing that each person’s experience with mental health is unique. This may sound obvious, but psychiatry, to some extent, has been built on generalizations. (That’s part of the critique from Insel, Frances, and others: Psychiatry, as it exists in the DSM, is just a directory of catchall symptom-based labels.) DuBrul didn’t like the idea of people’s singular experiences being stuffed in one of a handful of available boxes.

“I have a diagnosis of bipolar disorder,” DuBrul told me. “While that term can be really useful for explaining some things, it’s lacking in a whole lot of nuances.” He said he found the label “kind of alienating.” All that resonated with me. For Giulia, too, none of the diagnoses seemed quite right. In her first psychotic break, psychiatrists ruled out bipolar disorder; in her second, three years later, they were certain she was bipolar. Besides, DuBrul said, no matter the diagnosis, psychiatry “gives you terrible language for defining yourself.”

As for medication, DuBrul said that he believed that the answer to the question of whether or not to use pharmaceuticals needed to be far more nuanced than yes or no. The best response might be maybe, sometimes, or only certain medications. For instance, DuBrul shared that he takes lithium every night because he’s confident that, after four hospitalizations and over a decade with the label bipolar, the medication is a positive part of his care. Not the whole solution, but a piece.

All this was very comforting, but I really perked up and started paying careful attention when DuBrul introduced me to the concept of mad maps. Like advanced directives for the dying, DuBrul explained, mad maps allow psychiatric patients to outline what they’d like their care to look like in future mental health crises. The logic is: If a person can define health, while healthy, and differentiate health from crisis, that person can shape his or her own care. The maps are not intended to be rejections of psychiatry, though they could be that. The maps are designed to force patients and family members to plan ahead—to treat a relapse as possible or even likely—in order to avoid, or at least minimize, future mistakes.

This is where mad maps offer a shard of hope. Giulia and I, finally, are trying to make one, and now that we’re doing so I have to concede that in some ways, Laing was right: The treatment of psychosis is about power. Who gets to decide what behavior is tolerated? Who chooses how and when to enforce the rules? We started trying to create Giulia’s map by discussing the pills in the medicine cabinet. Under what circumstances would Giulia take them, and how much would she take? I took a hardline approach: No sleep for one night, pills at maximum dosage. Giulia wanted more time before jumping to medication, and favored starting the dose out light. We argued bitterly as we outlined our positions and punched holes in each other’s logic. Ultimately we had to sit down with Giulia’s psychiatrist to figure it out. Now we have a plan—for one bottle of pills. It’s a small victory, but a genuine step in the right direction in a world where such steps are rare.

We still have a lot to decide, most of it tremendously complicated. Giulia still wants three kids before she turns 35; I’m interested in avoiding a third hospitalization. When we set aside time to talk about things, we know we’re making calendar space to fight.

But I believe in these talks, because when we sit down together to discuss medication dosages, or a timeline for getting pregnant, or the risks of taking lithium during pregnancy, we are essentially saying, “I love you.” My exact words might be “I think you’re rushing things,” but the subtext is “I want you to be healthy and fulfilled, and I want to spend my life with you. I want to hear how much you disagree with me, about something that is as personal as it gets, so that we can be together.” And Giulia might be saying, “Give me some space,” but in her heart it’s “I value what you’ve done for me, and I support you in everything you do, and let’s make this work.”

Giulia and I fell in love effortlessly, in our carefree teens. We’ve now loved each other desperately, through psychosis. At our wedding we promised this to each other: to love each other and stick together in good times and in bad. In hindsight, we also should have promised to love each other when life is normal. It’s those normal days, now transformed by crisis, that have strained our marriage most. I realize no mad map is going to keep Giulia out of the hospital, nor prevent us from fighting over her care. But the faith required to try to plan a life together feels good and grounding. I’m still willing to do almost anything to make Giulia smile.