Hello I Want to Die Please Fix Me

by Anna Mehler Paperny

Trivedi argues fervently that, for people in the depths of depressive misery, accurate biomarkers could mean the difference between years of trying different treatment modalities and hitting on the right one in a matter of weeks. But, selfishly, as someone who’s been through an assload of meds, years of psychotherapy, and rTMS, and who may face the prospect of ECT sometime in the future, if I had to choose between funding long-term research into biomarkers and research into better treatments, I’d choose the latter in a suicidal heartbeat.

  It isn’t either-or, he tells me. “We have to continue research to identify new treatments….But there’s a lot of work being done to identify new treatments.” And with biomarkers, “at least we will be doing this in a more scientific, rigorous manner and not trial and error.”

  Biomarkers are alluring for pharmaceutical companies who’ve been turned off depression research because the failure rates are so high, the screening and progress measurement methods so fuzzy, because we don’t really have a decent road map to develop treatments. Biomarkers, he hopes, could improve that road map, making testing more precise and maybe shedding a light on how the disorder works, luring drug makers back into the field. They could also, as Ken Kaitin, the director of the Tufts Center for the Study of Drug Development, points out to me, make those drugs more likely to get FDA approval.7

  And then there’s the algorithm approach. It skips the pesky need for scientific breakthroughs and focuses on the product we keep churning out for tech giants: our personal data. As in every walk of life today, people are pioneering ways to personalize your depression treatment by harnessing your personal information and that of thousands of others. There are companies that will take your responses to a clinically validated questionnaire and use them to determine what course of treatment is most likely to work for you. Others use more “passive” inputs such as your daily behaviour to assess the state of your mind.

  The potential for data mining would seem to be even greater if your phone becomes your shrink, tracking your mental health (or its perception of your mental health) in real time. “We need to get away from this paradigm which is basically diagnose and treat: we want to predict and pre-empt,” says Janssen’s Husseini Manji. “Wouldn’t it be fantastic if you could, you know, get an early warning sign that someone’s depression is getting worse, or they’re getting more suicidal?”

  Silicon Valley has been betting on big data and the desire for a psychiatrist in your pocket. Google’s health sciences arm, Verily, wooed National Institute of Mental Health head Thomas Insel to chase data-driven mental illness solutions. Then Insel left Verily to do similar work at a startup called Mindstrong.8

  The idea behind these companies is to harness smartphones and the wealth of information they constantly collect—where you go, what you search, whom you text or message, whom you talk to, whose calls you ignore, what you say or type when communicating—to tackle mental illness. That would give you “a digital phenotype—a way of using digital information to get objective measures of behaviour,” Insel told me back in 2015, when he was still at Verily. “You can use that data to predict downstream events, like onset of mania, onset of depression, maybe the onset of psychosis.”9 According to Mindstrong’s website, its team used machine learning and closely studied research volunteers to develop “digital biomarkers” comprising swiping and tapping interactions with your touchscreen to assess your mental state.10

  Mental health apps have proliferated, surpassing ten thousand.11 Evidence supporting them has not kept pace. For one thing, there’s a paucity of randomized controlled trials testing how well these apps work.12 But the potential remains huge. So does the potential for harm: among other things, “nonevidence-based applications may distract patients and potentially cause them to delay seeking care,” John Torous and Laura Weiss Roberts write in JAMA Psychiatry.

  Here I have to ask: How do you use that data, and who uses it? What do you do with that information when you get it? Where do you store it, how do you keep it secure? Who has access to it—the patient? Clinicians? What inputs trigger what kind of response? If certain health states mean you’re robbed of autonomy, committed to hospital, would you want your phone making that assessment, alerting the authorities, your insurance providers? What about your employer?

  I don’t know whether my phone would think I’m crazy, whether my patterns of email and Twitter use, my phone calls with sources and texts with friends, my typing, swiping and tapping patterns, spell out something pathological. But I can say unequivocally that I’d be leery of having all that data collated and if the disclosures I make or the conclusions my phone draws could result in a chain of notifications that’d lead to cops showing up at my door and ushering me into a crisis ward, I would think twice and would probably avoid doing so altogether. But that’s just me.

  * * *

  —

  THE STRANGER ON the street beseechingly yelling at you to “smile, sweetie!” isn’t harassing you: he’s just looking out for your mental health.

  That’s the idea behind treating depression with—wait for it—Botox.

  The premise is seductively simple: Turn your frown upside-down. Or, if that fails, paralyze your frowny face muscles entirely. If you can’t make a sad face, you won’t be depressed.

  The multinational pharma giant and Botox-maker Allergan is conducting clinical trials in the hopes of obtaining FDA approval of Botox’s use for major depressive disorder. But Eric Finzi, the doctor, dermatologic surgeon and author of The Face of Emotion: How Botox Affects Our Moods and Relationships, has been injecting depressed patients with Botox, off-label, since 2003.

  “Botox is a way of influencing your mind, your brain, without you having to do anything, because I am influencing negative facial expressions,” he tells me by phone.13

  It’s not quite the same as the Botox injections associated with people wanting to be wrinkle-free: he injects the Botox into your corrugator muscles, the ones between your eyebrows that furrow when you frown.

  Your facial expressions aren’t simply the externalization of signals initiated by your emotional brain: they send signals right back, Finzi says, as part of a hard-wired animal feedback system. By short-circuiting part of that feedback loop, he says, you break the perpetuation of depression. “If you have sad thoughts, you will activate those muscles between your eyebrows. And if you activate those muscles between your eyebrows, your thoughts will get sadder. So it’s a circuit. And what Botox does is it’s sort of like putting a clip and cutting temporarily this neuronal circuit….If you’re not frowning, it sends the signal back to your brain continuously: ‘Hello, you have not frowned in the last month. Life must be pretty good out there.’”14

  Finzi figures he injects a few depressed people a week with Botox to alleviate their depression. They’re referred to him by psychiatrists, psychologists, family doctors. Because it’s off-label they’re paying out of pocket, about $400 a pop. On most people it works for about three months, at which point they need a booster shot. He’s less certain that partially paralyzing one of your facial muscles will also prevent a depressed person from killing herself. “I can’t say that [suicidal people wouldn’t commit suicide if they got Botox between their eyebrows]. I mean, that’s quite a leap.” But he said he had one patient whose suicidal thoughts went away a few days after getting Botox.

  But, I ask, if preventing a person from frowning means she’s no longer depressed, wouldn’t getting a person to smile do the same? “There’s no data” proving that, he says. But “I think it’s a good idea for anybody depressed to be laughing and smiling more….I will tell my depressed patients to smile more. But I have no idea whether it works or not. I don’t know.”

  I’m not a scientist or a doctor and I don’t know anything about Botox. But if you told me to smile more in order to stop wanting to kill myself, I’d be hard pressed not to punch you in the face.

  * * *

  —

  SO WHICH, IF ANY of these—deep brain stimulation, ketamine,
psilocybin, biomarkers, Botox, a smartphone psychiatrist—will prove to actually work for real people in the real world?

  The process of evaluating any new treatment should be the same, Sarah Lisanby, who was wonderful about letting me call back and ask dumb questions, tells me in one of our several conversations on the phone from NIMH in Maryland: What is its mechanism of action—what is it doing, and how does it do that? What are its effects on the pathology you’re targeting—what does it do to symptoms and how do we know that this is what’s doing that, and not something else? This is a purposely high bar, she points out, one we’ve yet to meet for many existing antidepressants.15

  “The field is scratching its head,” she says, about why the deep brain stimulation trials based on Helen Mayberg’s work failed. But she suspects it may be an issue of network precision—not just where the electrodes go but what the spots they stimulate are connected to; not just location but tuning. Ten pulses per second? A hundred? That’s part of what Darin Dougherty’s trial at Massachusetts General Hospital is seeking to answer. “The brain is a complex distributed network, a complex system, and we shouldn’t be surprised that initial attempts were met with limited success, because we need to refine them. We need to be smarter. This is a bad analogy, but we’ve all had the experience where we’re dealing with a GPS system and the GPS isn’t working and it’s telling us to take an exit which is the wrong exit. And we need to give the surgeons a better GPS, so they know which of these nearby highways and exits to target.”

  This all sounds fanciful and far away to someone wrestling with bullshit depression right this second. But Sarah Lisanby’s enthusiasm is catching. Like when it comes to smart wires that snake their own way through your brain. Existing wires are rigid. When you stick them into the brain it’s easy to poke through blood vessels, damage tissue. Researchers are working on smart, flexible polymers that can be “snaked around blood vessels, so they can clear the tissue non-destructively,” she says to me. “You’d like to have electrodes that can insert themselves and navigate around the brain structures. It’s almost like science fiction, right? But it’s science fact.”

  PART III

  A KICK IN THE TEETH

  18

  Stigma and Related Bullshit

  I am so beyond tired of the word “stigma.” Perhaps it once had resonance. Maybe its utterance once conjured a concrete, clearly delineated concept. But repetition has rendered it meaningless, the way a surfeit of swearing robs cuss words of their sting. “Stigma” came up in every interview I did for this book—with clinicians, with researchers, with people grappling with depression and suicide and with their family members. But its ubiquity in discourse lets us elide the agonizing crappiness it describes.

  So let’s be really, really clear about what persistent stigma means for people with severe mental illness.

  You’re faking it

  You’re delusional.

  You’re weak.

  You’re untrustworthy.

  You’re selfish.

  You’re self-pitying.

  You’re unstable.

  You’re dangerous.

  You can’t make your own decisions.

  You’re dumb.

  Your contributions are less worthy, more easily discounted.

  You’re a liability—personally and professionally and socially.

  You aren’t friend or lover or colleague or employee material.

  You make other people uncomfortable to the point they actively avoid you

  You’re less loveable.

  You’re less deserving of effective, accessible treatment than people with other illnesses.

  You aren’t worth the time or resources it would take to find out more about what’s wrong with you.

  People would rather not deal with you or your problem.

  That’s stigma. It’s gross and profoundly damaging.

  * * *

  —

  POOR STACEY WAS just doing her job when she phoned, a representative of an employer’s insurer quizzing an employee about a sudden protracted absence from work. But instead of a malingerer caught in the middle of a bedridden movie marathon, she got me: crazy lady pacing her curtained-off corner of the short-stay psych ward, shiftily clutching the cell phone she wasn’t supposed to be using. By then I’d been there more than a week—a lifetime by that ward’s standards. I knew I wasn’t being set free and was about to be sent upstairs at any moment. I was a jumpy motherfucker.

  “Hi, Anna? We were just wondering about your absence from work….”

  “Uh, yeah. I’m in hospital….”

  “Right. Can you tell me why?”

  “I tried to kill myself.”

  It was the first time I’d uttered those words—vertiginously terrifying and emboldening all at once. I freaked myself out almost as much as I freaked out Stacey.

  “Oh.” Long pause. “Yes, I think we would cover that.”

  I realized later how lucky I was to have gotten short-term disability coverage, about seven-tenths of my salary, during three sick leaves at two different employers: two in the ICU and psych wards after suicide attempts, one when taking sick days on short notice threatened my continued employment and prompted a strenuously recommended three-week leave of absence.

  I swear, depression doesn’t make me fuck up assignments. I can write stories and break news and still achieve, some days, that immersive euphoric high in pursuit of a story, can lose myself in interviews about neonatal abstinence syndrome or opioid misuse or the Higgs boson. There are bad days and worse weeks—I almost missed a press conference about a fatal shooting because I was having a minor breakdown in a bathroom stall; I spent a panicked drowning week chasing breaking news on a caved-in mall even as I struggled to focus on anything but oblivion. I spent weeks going to work in a zombie-like state. But it was the periods between purpose-giving stories, when I went home and couldn’t go to bed and couldn’t wake up, couldn’t get dressed, couldn’t leave the apartment, that fucked me over. Again and again and again. I struggled to explain inexplicable absences: How do you say, “I missed work because I was flattened by self-loathing and I didn’t tell you enough hours in advance because I was flattened by self-loathing” without sounding like a nutbar or a liar or irritatingly self-pitying? I gnawed my pen to avoid crying in a meeting with two managers wondering aloud why the person who worked like a fiend was showing up at eleven o’clock. When one of them implored across his desk, “Give us something to work with here,” I caved and told him the truth and immediately wished I hadn’t. In another meeting a year later—different manager, same reason—my self-control failed and I wept so profusely I embarrassed us both. How could anyone ever hope for a normal professional relationship after that? How do you make that anything other than a professional sucker punch?

  I don’t know if it’s possible to convince myself, much less another person, that I’m not a workplace liability. I do know that every time I’ve told someone about my mood disorder I’ve come to regret it.

  (So it’s maybe weird, then, that I’m writing this book. And I’d be lying if I said I don’t worry this mass disclosure will be something I regret. But sometimes some things feel too important not to do.)

  We talk a big game about talking. Online hashtag culture creates a cult of confessionals. There’s #sicknotweak (i.e., mental illness is a sickness, not a weakness). In Canada, a corporate-sponsored campaign called “Bell Let’s Talk” spawns an annual flood of personal mental illness disclosures.1 Various celebrities, from British princes on down, are big on awareness campaigns. In the face of our fetishization of openness, Toronto’s Centre for Addiction and Mental Health psychologist Donna Ferguson suggests people pause before disclosing a mental illness, even to those closest to them. I interviewed her for a Global News online story. “You really want to know what the relationships are like…and how supportive people are,” she says. “You never want [someone with mental illness] to tell people and feel ashamed or criticized or ostracized.”
When it comes to the workplace, she’s unequivocal. “I honestly don’t think it’s employers’ business. If you’re off on a medical leave, you’re off on a medical leave. Or if you’re at work still, and things are not going well, some people feel comfortable saying to their direct supervisor, ‘I’m having some symptoms.’ And I think if you don’t, don’t. You don’t have to. You’re not obligated….It’s personal. It’s confidential.” 2

  Openness is key. Talking is everything. But there are days I want to shout her words from the rooftops.

  In fact, know that by law in many jurisdictions your boss isn’t even allowed to ask. But it’s one thing to know that; it’s another to feel pressured to disclose only to kick yourself for it afterward. I’ve found myself struggling to make my mood disorder sound sufficiently serious to warrant whatever weird absences or lack of drive I’m asked to explain while simultaneously downplaying any impression of unstable lunacy. Failing at both.

  * * *

  —

  IN CHASING THIS BOOK I talked to people who’d experienced—directly and personally—the brunt of depression and suicide from all their myriad shit-ass angles. They trusted me with their most personal stories and in some cases I promised not to fully identify them, because being known as someone wrestling with depression can still shaft you in innumerable ways. And that’s bullshit.

  I talked to Mary in a bustling dark café-bar on Toronto’s Danforth Avenue.

  MARY

  Honesty cost Mary dearly. It obliterated financial security in the event of death, disease or injury: any protracted absence from work will throw her and her teenage daughter into financial peril. Mary doesn’t smoke or skydive or do drugs; her health and blood pressure are better than average. But she has depression and she told her employer’s insurer the truth when asked. And now there’s a hard cap on the amount of life insurance she can get. She’s ineligible for any short-term or long-term disability payments, no matter the reason.