The difference between well-being and being well
by Monica Black; illustration by Kelsey Skordal
I have been on mood stabilizers for about two months.
Mood stabilizers sound like they’d do more than they do. Nothing has really changed, except now I get migraines and alcohol makes me sick. I see the school psychiatrist about once a month. She asks me how the medicine is going, and I give her a list of side effects. I tell her that I haven’t had a manic episode, but the day Kendrick’s untitled/unmastered came out I spent six hours transcribing and posting the lyrics before anyone else got to it. She makes a note of this. “Sounds like hypomania,” she says.
I got the meds because my best friend insisted that I get some kind of medication. I was living with her when I last started feeling crazy, during half-block. She got tired, I think, of coming home after a long day to me, drunk and paranoid that she hated me. A day before the block started, when I was still reeling from the impact of my mind, she packed everything I owned up in boxes, took me back to my own dorm, and handed me 25mg of melatonin.
“Pass out,” she said. “I don’t want to see you till 5pm tomorrow.” Outside of myself, she’s the only person I listen to.
I recounted what happened to the psychiatrist that month: One day, I was fine, and then on New Year’s a switch flipped. I was drunk, and I didn’t fall asleep. I didn’t sleep for the next couple nights. I was staring at the space heater in my room, and I burst into tears. And then the fighting started. I looked over at my friends one night, sitting around playing guitar, and became certain that I had wronged them in countless ways. I cornered one, and begged her for forgiveness for an insignificant bruise. I called old friends, setting fire to ashes, and yelled at them for not having called me. And under it all, a loud and flighty voice said, “Why not run six miles today?” even though I was recovering from surgery, and besides, I’d only ever run three. The way I tell it, it sounds so stereotypically manic I can’t believe there was a time I didn’t see it. The psychiatrist took all of two seconds to diagnose me and write me a script.
But even as I write it, I question what happened. It could be that I’m dramatizing it, that I just need some story to make sense of the disjointed, the pathetic, the desperate moments. The achiness when I think about how hurtful and how “crazy” I’ve been fades when I can give the crazy a name. But there are other explanations. When I drink, I don’t sleep. And when I don’t sleep, I start to fight with people. When my relationships start to go downhill, I get restless and start to drink.
All this makes me think of the Rosenhan experiment. Eight researchers, calling themselves “pseudopatients,” reported auditory hallucinations and were admitted to various psychiatric hospitals, at which point they dropped all pretense of being mentally ill and behaved normally. They stopped reporting hallucinations. The doctors, just doing their jobsof course, labeled them with “schizophrenia in remission,” and sent them on their way two months later with a bunch of antipsychotics. The outrage in the health community was huge, but I’m not sure much has changed.
I can see it, though I wasn’t there. With every meaningless comment, every move, the doctors would scribble furiously in their notebooks. “Kathy fiddles neurotically with button while speaking to the psychologist—definitely psychomotor agitation.” “Kathy has expressed disgust at the cafeteria meatloaf and refuses to eat it—likely disordered eating.” “Kathy spent all day transcribing the lyrics to the new Kendrick Lamar album—undoubtedly hypomania.”
That was back in the day before treatment was a conversation between two people, when mental patients were treated with the same level of consent that one might employ when squashing a roly-poly. They were held in a psychiatric institution, where patients are notoriously kept at the whim of their psychiatrists. But I’m a college student, a prospective neuroscience major, free from the bars of those white-walled institutions, going to the health clinic on campus after class. I could stop the medication at my own whim. And honestly, that’s the problem. The onus of responsibility for my own health terrifies me, when I don’t even know what my subjective experience is supposedly telling me. So I still have to ask myself if I stayed up late last night because I had a cup of coffee at 3pm or if my brain is on the edge of madness. Don’t they have a test for this?
“When a person presents with a psychiatric illness, first of all, the only way they can assess that psychiatric illness is through the report of the patient,” said Lori Driscoll, professor of neuroscience. “It’s not easy to determine what the true signs are, in part because some psychiatric illnesses are covered up by the patient, or the patient doesn’t understand them.”
To detect depression in rats for clinical trials, Driscoll tells me, they have them swim around in a closed tank until they realize there’s no exit. The quicker they give up, the more depressed they are. (“We don’t let them drown,” she tells me. “I know, I hate it.”)
The Diagnostic and Statistical Manual (DSM—in its 5th edition) lists a variety of symptoms for each illness, many of which must be present in a high proportion for the diagnosis to be made and medication to be prescribed. This system requiresverbal reporting by the patient, and the DSM—written by clinical psychologists and psychiatrists, who, remember, are paid to prescribe medicine—is undergoing constant criticism and revision. Homosexuality was infamously a part of the clinician’s bible until the 1970s. Binge eating disorder wasn’t added until 2013. The DSM-5 saw changes even to bipolar disorder— a diagnosis I used to think was set in stone.
If it were anything else, we could measure it. We can see a tumor on a graph; we can test for HIV with a pinprick. We know what’s happening at the molecular level. A jumble of symptoms that line up half with mania and half with depression tell us little about what box can be checked on a diagnostic form. I asked Driscoll whether or not the imperfect method of diagnosing people based on ever-changing symptom requirements would become more nuanced, more scientific, in our time. “I could see us being able to read electrical activity with more sophistication, like an EEG,” she told me. “I don’t think brain imaging is fine-tuned enough yet. It’s a problem. And I don’t know how we’re going to get around it. Because every person carries experience around with them and how do you measure experience?”
Even once you come up with a satisfactory diagnosis, you still have to treat it. There are, of course, the two common options: medication and psychotherapy. I asked Driscoll about her specialty—the former.
“The problem with pharmaceuticals is that it’s like trying to flatten a pea with a sledgehammer,” said Driscoll. In the brain, neurons are specialized to send out one type of signal—for example, serotonin. If a patient is given an SSRI, then the medication will target all the systems in the brain that communicate using serotonin, not just the ones that are causing problems. Hence, the side effects: migraines, nausea in response to alcohol, insomnia, flattening of emotions.
“We need a smaller sledgehammer,” Driscoll said, laughing.
The medication itself is imperfect, but even more so is the system that administers it. The expectation that psychiatrists will prescribe drugs is so commonplace that it’s disorienting to think of a time before we were a Prozac nation. And when medication has even a chance of working, it seems negligent to leave it as a last resort.
“I think doctors are stuck in a very hard place,” said Driscoll. “They see medication as the tool that they have. Both patients and doctors expect that you’re gonna throw a drug at something and see if it works.”
The science journal Nature reported last year that placebo effects are rising in the United States—and only the United States. It’s so bad it’s making the development of drugs nearly impossible since the results of clinical trials are close to meaningless. We love the idea of a pill so much that we actually feel better when we take one, even if it’s made of sugar.
The whole system is so haphazardly thrown together that I walked away from my conversation with Professor Driscoll feeling like a victim and surer than ever of what I had always thought: I don’t know if this diagnosis—based on symptoms I’m supposed to report but that I can’t even remember—is right, or if I even need to take these pills. Have they ever really helped, or is it my mind tricking me? I don’t think my psychiatrist knows for sure either.
***
The last time I went in to the psychiatrist, I sat down on the couch and said, “I want to go off the medication.” I don’t think this is an unusual comment. A miffed expression flashed across her face, but she explained to me that if I went off medication, I could become sicker, a lot sicker. I have no choice but to trust her.
Dr. Robert Post famously came up with the Kindling Theory: that mania, once it happened once, would recur again and again, and that life stressors would matter less and less each time. It would matter less and less whether or not the patient was drinking too much, or whether or not they got enough sleep last night. Yes, he called my brain firewood and suggested that the fire be put out violently and without delay.
I sometimes wonder, though, if I even mind being sick. I think of winter at home in Chicago. There was a blizzard five years ago on Groundhog’s Day that lasted for two days and stranded hundreds of people on Lake Shore Drive, where they abandoned their cars. The city looked so noble. People, bent over like deflated blow-up dolls trudging their way home. The skyscrapers were rubbed away in the storm. I had heard my whole life what monstrosities Chicago was capable of, and it delivered.
One night this winter I didn’t sleep at all. I yelled and yelled and yelled at my best friend. I told her awful things, true things, things that I usually don’t think about. They’re things that I would rather not think about, that bubble over only when my brain has failed to properly metabolize them and destroy them before they reach like weeds into my conscious thoughts. I’ve never loved anyone properly. I’ve destroyed much more than I’ve created. Why spend all my time plodding along when we know how it will end? It’s probably better to die than to live a pointless life. I took a walk to calm down, and then sat in my bed, and then took another walk. Everything looks different by night: bleaker, but more intense, more honest.
“If I never got like this,” I told my best friend when it was all over and I was apologizing for the histrionics, “I think I would have stayed the same person for 18 years.”
Edward Thomas, the British poet, wrote: “I wonder whether for a person like myself whose most intense moments were those of depression a cure that destroys the depression may not destroy the intensity.” Denial about the realities of life and death, researchers say, goes out the window pretty quickly in mental illness. Thomas was thrown open by this great expansiveness and reflectiveness that I also feel, but his life was punctuated by destroyed relationships—his own wife hated him. The cost of intensity is high, but so is the cost of feeling nothing.
That normality, that coveted calm-after-the-storm, feels like a hangover. I wake up one morning after the drunken delirium has subsided, and my body aches, my head is numb, and I feel like apologizing—to whom or what, I don’t know. My friends’ laughs are abrasive. And I still have a list of shit to do that I put off until Saturday. Daily life chugs onward, slumps forward, and I want no part in it. The illness is one thing, and it’s absurd in its own right, but the nuances of daily life are a million times more complicated.
It’s that old fear: Am I sick? I hope I’m deeply sick, because if not, this is my life: in my dorm, where the lighting is dim and I can’t sleep; out to lunch, where I have nothing much to say; on my phone, where events far, far beyond my control unfold in hourly notifications; in class, where the professor, no matter how amazing, drones. If those things aren’t sickness, then they’re normal, and I just get so tired of it all.
It’s funny and surprising to me how invested people are in the supposed coherence of life, no matter how bleak the odds look. They ask people on dates or fly off to God-knows-where to start new lives. That love of life has always looked so unattainable to me, something for happy, confident people—not me. I always thought I lacked the will to treat the world as my playground. I make messes; I don’t clean them up. But I started asking myself, looking around at the people I love who so often create and so rarely destroy: Could I make it up? I’d rather sit, but I’ll cook; I’d rather listen, but I’ll talk; I’d rather wait to be asked, but I’ll ask them; I’d rather stay here and stew, but I’ll move. I’m finding out what Newton knew: An object in motion stays in motion.
Though I always thought differently, when the clouds of mental illness lift, it’s not just the sheen of unpolluted life on the other side. It’s the slog of normality. I think I’m getting better at living the slog, and living it well.
***
My friend, who has her own burdens, once told me that some of us are just eternally fucked-up and even when we’re doing okay, we’re not really okay. Madness is always arriving. She doesn’t say this with sadness, but with an acknowledgment of her fate. She directs me to Eleanor Longden’s Ted Talk on schizophrenia. Longden was diagnosed with schizophrenia when she was young. For years, she thought of the voices as enemies to be defeated, as symptoms of a sickness. The voices, during those years, berated her, talked badly about her, conspired against her. When she moved toward accepting the voices as just another part of her, something miraculous happened—the voices became pleasant, supportive even. In Longden’s mind, this meant: Sick is all relative. Sick is what you tell yourself is bad.
It might be a facile idea, and it’s probably wrong, but it’s helpful: I am not broken, I’m just me.
Am I sick? Sometimes, usually when I’m happy and nevertheless taking two pills a night at bedtime, I feel like I’m gas lighting myself. Other times, when I’ve spent the whole week on the floor of Mathias putting puzzles together because the movement distracts from the static in my brain, I know at least that something has to change. In part, it’s a relief to know. But it means I have a world of hurt ahead of me, of self-doubt, of asking myself over and over again if this is caffeine or mania, if it’s always been caffeine and has never been mania. It means I’ll have appointments forever, and I’ll have to go even when I don’t like the institution of psychiatry that month. It means maybe I’ll take medication that half-works and half-doesn’t, and that they later find out kills you.
But it also means learning to place bets on life and to refuse darkness as the only answer. It means accepting that part of me will never be like the girl down the hall, that I can’t stay out all night drinking, and I’ll need to email professors and ask to stay home sometimes, and that I’ll have periods where I never sleep and periods where I can’t stop sleeping. It means I’ll be grateful for these mercurial seasons of up and down and the clarity they bring. It means I’ll make relationships with people I can keep. It means I’ll love what I do. It means I’ll be well.