The nightmares started soon after. In her dreams Shala saw her parents lying on a guillotine with the blade about to fall, and once she awoke she knew—knew—that only she could save them . . . by concentrating on an image powerful enough to vanquish the image of the guillotine: of a horseman galloping to their rescue. Sometimes, though, after conjuring the chevalier, Shala remained terrified that her parents might still be in danger. So urgent, so compelling was the feeling that she could only compare it to what it must feel like if terrorists invaded your home and took your family hostage and pointed a gun at your child or mother or father or sister or brother and said if you don’t do this I’ll pull the trigger. “It’s a hot, sick, molten feeling that grows and expands and fills your whole core with fear,” she says. “You do whatever he says,” where the he was the message from her brain that something catastrophic would befall her parents if she didn’t . . . well, the thing she had to do changed over the years. But what did not change was the certainty that she couldn’t tell anyone: “You don’t tell what you see in your head because if you do you will make it happen. I kept it all to myself.”
The “it,” Shala figured out in her twenties when she finally saw a therapist, was obsessive-compulsive disorder. It drove her to execute rituals that seemed as senseless as they were impossible to resist. Senseless rituals like fours. Shala counted to four, did things in fours, and arranged her toys and books and stuffed animals in fours to ward off the disasters poised to engulf her parents. If the anxiety kept its grip on her throat, she pulled out the big guns: sixteen. Even thirty-two.
Shala was working thirteen, fourteen, fifteen hours a day as a sales representative and marketing manager. The brutal hours were the only way to stifle the thoughts, since when she was mentally engaged her brain didn’t see danger everywhere. Therapists were no help. When she revealed her fours compulsion to one and then another and eventually several during a nearly Homeric odyssey in search of help, “they told me to just stop having these thoughts,” she said. (On average, people with OCD struggle with the disorder for fourteen to seventeen years before receiving an accurate diagnosis; they see at least two therapists before finding one who knows how to treat it, according to the IOCD Foundation.)
“Just stop!” is the most common response to someone in the grip of a compulsive behavior, with “you’re crazy” a close second. But stopping was the last thing Shala felt able to do. While she was driving to work, her brain regularly asked if she was certain—totally, completely certain—that the ka-thump she just heard was really a pothole. Maybe it was someone she had just run over, so shouldn’t she turn around and check, but wait that’s ridiculous, no if she goes back right now she might be able to save them; okay, turning around; sh**, where was it? . . . until eventually Shala was late for work. The compulsions, like some fetid miasma rising from a horror-movie swamp, were “destroying my life,” Shala says.
One day in her late thirties, Shala heard OCD whisper, I think your cat Fred is in there, freezing to death. Oh, come on, the non-OCD part of her brain retorted; how could Fred have gotten into the refrigerator? But of course, it doesn’t hurt to look; such a tiny effort for such enormous peace of mind! There; no Fred. I think you should check one more time. Definitely no Fred. Shala stood there opening the refrigerator, poking around until she had assured herself that Fred was neither in the crisper nor hidden behind the jug of orange juice—and then looking compulsively again, and again, and again, a hostage to the OCD. During one of these sessions, Fred sauntered by and into the living room. Shala got an awful thought: maybe Fred teleported himself into the freezer just as she lost sight of him. So she checked again. “I’d say to myself, I know this is ridiculous,” she told me later. “I knew Fred wasn’t in the refrigerator. But I couldn’t walk away.”
Intrusive Thoughts, Overwhelming Desire to Act
Before the 1980s, OCD had an estimated prevalence of 0.05 to 0.005 percent, so in a Times Square crowd of twenty thousand on a busy summer Friday you might have one to ten people with OCD, making it one of the rarer mental disorders. Yet over the next thirty years the prevalence seemed to explode. There is bitter controversy about why (overdiagnosis? previously missed cases?), but the National Institute of Mental Health now estimates that 1.6 percent of Americans will develop this neuropsychiatric disorder sometime during their lives and that 1 percent of U.S. adults, or 2 million to 3 million people, have OCD in any given year, with men and women equally at risk. The disorder is half as prevalent in kids, setting up shop in the brains of one in two hundred of those under eighteen. If OCD is going to develop, the most likely ages for it to appear are around ten to twelve or in late teens and early adulthood. Both are periods when the brain is engaged in a frenzy of growing neurons and forming connections and then pruning back those connections, ridding the cortex of extraneous synapses, processes that offer ample opportunity for something to go wrong.
The basic description of OCD is pretty simple. To meet the American Psychiatric Association criteria, you must have distressing, recurrent, persistent thoughts or mental images—obsessions—that feel intrusive and (almost always) “ego dystonic.” The last phrase means the thoughts, rather than emerging as part of your true self, feel as if they have invaded the mind from outside thanks to a malevolent puppeteer pulling the neuronal strings of your brain. They clash with your ideas of who you are and what you know to be true. Ego dystonia also means a part of the brain knows the thoughts—most commonly, that you are covered in a slime of germs, that something is “not right,” or that some horror is poised to strike those you love—have only a tenuous connection to reality.I As a consequence, while giving in to the thoughts’ demands relieves the attendant anxiety, it brings no joy and little satisfaction: you feel you are obeying the command of that puppeteer. You have lost the battle for control of your own mind.
The feeling that the intrusive thoughts originate from outside the part of the brain that makes you you does not defuse their power, and arguably makes the disease that much crueler. It may seem as if there is nothing worse than, say, the early stages of Alzheimer’s, when someone knows she is losing her memory and her mind but can do nothing about it. OCD comes close: patients know their thoughts are mad, yet awareness of the madness brings no power over it. The vast majority of people with OCD recognize that a cat that just walked by can’t really be inside the refrigerator, or that the stove they already checked five times isn’t still on, or that failing to scrub their hands raw will give them AIDS. Yet they feel that while the thoughts have an infinitesimal probability of being true, infinitesimal does not equal zero. The resulting doomsday fear can be alleviated only by executing an action, so they give in, and give in, the sane part of the brain observing the madness with all the horror of a driver helpless to control a car skidding over a cliff.
This is the second element of OCD: the compulsions, repetitive and often ritualized behavior people with OCD feel driven to perform because they suspect, think, or worry that if they do not then the frightening things that obsess them will come true. They carry out the compulsion the obsession commands because, unless and until they do, the anxiety has them by the throat and cortisol is coursing through the brain like the toxic overflow from a Superfund site. The specific compulsions that someone with OCD feels driven to execute range as widely as the most gothic imagination. Based on reports from OCD clinics, washing (triggered by obsessive thoughts of germs and other contamination) and checking (driven by an obsessive thought that something is dangerously wrong, like a stove left on) are the most common.
For Americans of a certain age, the best-known OCD sufferer was Howard Hughes, the industrialist, movie producer, and late-life recluse. He became deathly afraid of germs and therefore of human contact, and used his billions to feed his compulsions. His instructions to his staff on “preparing canned fruit,” for instance, ran to nine tortuous steps, the third of which directed that the can be washed before opening, the label soaked and removed, the cylindrical par
t scrubbed “over and over until all particles of dust, pieces of the label, and, in general, all sources of contamination have been removed,” and the “small indentations along the perimeter” attacked with copious quantities of soap lather. Step five: “While transferring the fruit from the can to the sterile plate, be sure that no part of the body, including the hands, be directly over the can or the plate at any time. If possible, keep the head, upper part of the body, arms, etc. at least one foot away.”II
Washing compulsions are normal behaviors that have become hypertrophied in the OCD brain, which likely explains why they are so common. Checking compulsions, too, reflect normal drives that OCD has ratcheted up to irrational proportions, producing a “something is dangerously wrong” obsession that tortures its victims until they perform an action—checking the door or the stove, or doubling back in the car to see if the ka-thump really was a pedestrian they hit that—brings a “phew, danger averted” feeling. Many of us, for instance, experience the occasional nocturnal worry “uh-oh, did I bolt the door?” but Tom Somyak felt it invade his mind multiple times every night, starting in his twenties when he was first living on his own. He felt compelled to heave himself out of bed, haul himself downstairs, and check the locks and deadbolts on the front and back doors, again and again until sheer exhaustion stilled the demons rampaging through his brain.
When Somyak left for work every morning, the desperate need to check again overwhelmed his mind—Did I lock the door?—forcing him to turn around and reassure himself that he had. As with his nighttime compulsion, the daytime version would not be quieted with a single check, and on some mornings he turned back eight times. “It was a feeling that something wasn’t right,” Somyak recalls of this period almost twenty years ago. “So I didn’t try to resist it. I just gave in and checked.” And checked again. And again.
The birth of his son was the sort of life-altering event that can convince the mind that there are more dangers than were dreamt by Somyak’s earlier OCD. He was making the boy’s preschool lunch one morning when he got a mental twinge: I just touched the refrigerator door and now I’m handling these slices of bread for his sandwich; what if I just covered them with germs? So he washed his hands. But he would then touch a utensil, and who knew if that had been properly cleaned—so he washed again. And he would pick up a juice box, whose previous handlers at the grocery store were anyone’s guess, so he washed again, lest he transfer deadly pathogens to his child’s food. “It was an all-consuming compulsion to keep things clean for him,” Somyak recalled. “I knew he was crawling on the floor and picking up all sorts of dirt and germs, but it didn’t matter: I had to do this to keep him safe.” Making lunch took an hour. “I knew something was wrong with me, but I figured it would pass,” he said.
His symptoms abated for a few years, which is not unusual with OCD. Also not unusual is that when his OCD returned, it took another form. In 2001, someone mailed anthrax spores to media figures and politicians in New York and Washington, killing five and causing an additional seventeen people to contract anthrax poisoning in the worst bioweapons attack in American history. Somyak was in Austin, Texas, where he runs an OCD support group—and which there was no reason to think was on the anthrax mailer’s target list. But the case remained unsolved for nearly a decade.III Who knew what and where the terrorist might be plotting?
Somyak did what he had to: he wouldn’t let anyone else bring mail from the box at the end of the driveway into the house. When he did so it involved a complicated, ninety-minute ritual of putting on old clothes and gloves, Cloroxing every surface the mail came into contact with, getting special bags to deposit the envelopes in . . . “What if we got mail that had gone through the same sorter [that the anthrax letters had been through]?” he asked me. The question had an element of rationality: that is how ninety-four-year-old Connecticut resident Ottilie Lundgren received a lethal dose of anthrax, and how several others became sickened. But Somyak had taken the concern to a pathological extreme. “It’s like you’re a night watchman in a warehouse and you hear an alarm go off,” he said. “You look for the reason. That’s what it’s like to people with OCD: you feel this anxiety welling up in you, and you look for a reason.”
* * *
Like checking compulsions, just-right compulsions are driven by the feeling that something is amiss or awry. But while most people would agree that the target of a checking compulsion poses a threat (like an unattended stove left on or the front door of an empty house left unlocked), only someone with OCD sees the objects of “just right” compulsions as needing to be fixed. Irrational rituals consume them like a supernatural pyre, compelling them to count the doors they pass walking to work, to alphabetize the cans in their kitchen, to touch certain objects in a magical sequence before leaving home.
The “something is wrong” feeling takes a more inchoate form than obsessions with germs, triggering the belief that they walked or spoke or thought in a way that will lead to an unbearable tragedy. Shala Nicely’s obsession that Fred was trapped in the refrigerator is one of the more imaginative variations on the just-right obsession: a feeling that something is amiss in the world seizes the brain and anxiety insinuates itself into what feels like every pore in your neurons, triggering a sense of throat-gripping terror about what will happen if you do not obey its commands. In milder forms, the just-right compulsion arises from the feeling that objects are arranged wrong, where “wrong” is in the eye of the anxiety-laden observer.
Megan’s earliest just-right compulsions came when she was four. When it was time to put away her toys—especially Legos and Duplos—she didn’t simply dump them into a box. She took a deep breath, surveyed the littered bedroom landscape of reds and blues and greens and other hues, and the cornucopia of shapes, and tentatively picked up, say, a red four-dot block. And put it precisely there to start a pile. And then she picked up a four-dot blue . . . but wait, does it go with the four-dot red, or should it go with its fellow blues? Paralyzed with indecision over the exactly right place in the universe for that and every other toy, Megan would try one organizing principle and then another, arranging and rearranging, as the insistent messages pummeled her brain: Wait, are you sure that’s right? It might not be.
“If it wasn’t just right I wouldn’t put it away,” Megan told me. “My parents thought I was obstinate. But it wasn’t that: it was this powerful ‘just right’ compulsion. It was better to leave the toys out and scattered all over than to put them away wrong. I’ve never known a time in my life when the just-right anxiety wasn’t present.”
Megan, who was working in a biology lab at a large midwestern university when we spoke, now confronts her compulsion by using the “only handle it once” regimen, which teaches people compelled to arrange things “just right” to organize them into broad categories and then move on. If someone else decides where to put away lab equipment at the end of the day, she can manage; knowing someone has figured out the organizing principle seems to keep the just-right anxiety at bay.
* * *
OCD is the best-known form of compulsive behavior, but familiarity doesn’t breed understanding. Popular culture often depicts the disorder as sort of cute and cuddly and charmingly eccentric, like the detective Adrian Monk in the television show Monk (who needs to straighten pictures, align cutlery on tables, and form symmetrical piles of magazines on tables so everything is “just right”). Every one of the people with OCD I spoke to echoed what Shala Nicely told me: “You never see what’s happening inside the person, so you never see the level of fear, of totally debilitating, gut-wrenching anxiety. What most people understand about OCD is what they see outwardly. If someone says, ‘oh, I’m a little OCD’? They have absolutely no idea what they’re talking about.”
If a thought doesn’t cause you distress as intense as what you would feel if someone held a gun to your child’s skull, it isn’t OCD. If it does not make you feel like your blood is about to burst the walls of your arteries, it isn’t OCD. If it isn�
�t paralyzing, preventing you from doing anything else until you address the source of the anxiety, it isn’t OCD. “It has to be an emotion so overwhelming, frequent, and intrusive that it keeps you from functioning, and so crushing you would do anything to get rid of it,” Jeff Szymanski of the IOCDF told me.
One diagnostic criterion for OCD requires that the compulsive behavior “cause clinically significant distress or impairment” in social situations or on the job and be “time-consuming.” While the idea of being “a little OCD” is therefore both a scientific misnomer along the lines of “a little pregnant” and an insult to those with the disorder, there is no question that OCD, like every mental disorder, exists along a spectrum from extreme to mild.
Although psychiatrists have long believed that the compulsive component of OCD is a consequence of the obsessive part—you wash because you believe your hands harbor a jungle of pathogens—new research has raised another possibility. For at least some people with the disorder, a recurring urge to, for instance, wash their hands precedes obsessive thoughts of contamination rather than follows them. It is not clear where that recurring urge comes from, though it could be a habit that hypertrophied. Then, as the brain tries to make sense of the perpetual washing, it seizes on contamination as the most logical explanation: The reason I’m scrubbing my hands every few minutes must be because they’re covered in germs. In this case, compulsion rather than obsession is both the core feature and the genesis of OCD.
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