Can't Just Stop

by Sharon Begley

  A Small Price to Pay to Avert Disaster

  Anxiety is an evolutionarily ancient brain system, one that natural selection favored for the same reason it favors any trait: it increased the chances that those who possessed it would survive and reproduce, passing it along to their descendants unto the nth generation. In this case, a visceral, emotional feeling that something is amiss long before our rational, conscious mind can perceive it served our ancestors well. Our Paleolithic forebears who did not feel anxiety at stealthy footsteps, or who failed to act on it, became evolutionary dead ends: before they could reproduce they were some predator’s lunch. But those who felt and heeded the anxiety by seeking its cause survived to reproduce. As a result, in us, their descendants, the default state of the brain is to reflexively obey the diktat of anxiety first and question it later (or not at all).

  It is not clear why Nicely and others with OCD have a more acute version of that response. The brain circuitry underlying OCD has been worked out in greater detail than it has for any other form of compulsive behavior, but that explains “how,” not “why.” The latter, in the sense of the genesis of that circuitry, is still so poorly worked out that all scientists can offer is a mumbled invocation of life experience and genetics.

  Here’s the thing about anxiety: when it is sufficiently, torturously intense, we will do anything to alleviate it. If the “anything” seems fairly inconsequential, and the relief immense, the brain learns an enduring lesson in what we might call mental cost-benefit analysis. When Shala Nicely gave into her brain’s command to open the refrigerator, it seemed but a small cost for the benefit of knowing that Fred wasn’t turning into a cat-sicle, a possibility that tore at her mind like a Tasmanian devil with capsaicin under its claws. Of course, when the thought recurred the moment Shala closed the door, the cost of vanquishing it over and over again escalated until the wasted time and misery left her barely able to function. But by then it was too late. The OCD brain learns that executing a compulsion works; if following the orders of the terrorist holding a gun to your daughter’s brain (in Nicely’s analogy) spares her life each and every time, of course you learn to follow orders.

  For Dave Atlas, the cost-benefit analysis is obvious: he is regularly bombarded with thoughts that his family is in danger. He does what he must to keep the horror from coming true.

  “I have a lot of obsessive thoughts,” Atlas told me, “all about keeping my family or me out of harm. I’ll see a picture of a shark online, and because it represents a threat I have to knock wood three times and say, ‘my family will be okay, my family will be okay.’ Or I’ll be walking down the street and have a thought that something bad is going to happen to them—this happens twenty or thirty times a day—and I have to hit my head three times to get rid of the feeling. If someone says, ‘oh my god,’ it also makes me think something bad will happen to my family, so I have to put my hands together and turn my face to the sky,” as if to appease a threatening deity.

  We were sitting outside a Starbucks in Manhattan’s financial district. His OCD had not paralyzed him—Atlas held a job in healthcare IT—but the intrusive thoughts were like an insistent toddler that demanded constant attention, breaking his concentration and distracting him from work. As he described the feeling—a throat-clutching anxiety—a cab driver speeding up traffic-clogged Water Street swerved around a slow-moving van and came to a screeching stop at a red light, three inches short of a pedestrian. Unthinking, I blurted out, “Oh my god!” And Atlas did what he had to do to keep his family safe. He turned his face skyward, pressed his palms together, and then gave his head three quick punches.

  * * *

  After speaking with Atlas I walked uptown, where I met Leah. She had just graduated from college and was about to start a job at a daycare center. As we made our way across 42nd Street to the atrium of Altria’s headquarters, she seemed to be picking her way unusually carefully, watching the Tennessee marble floor of Grand Central and then the asphalt street as if she were afraid of tripping, and sort of shuffling along. Once we found a table, she explained.

  “I have to make things even,” she said. “If I step on one thing, like a piece of paper, I have to step on another one of the same shape and size. Or if I step on a crack, I have to step on another to balance it out. If I don’t, my dad will be attacked.”

  Once when she was in a coffee shop and smelled smoke, firemen suddenly rushed in and ordered everyone to evacuate. In a rush, Leah ran roughshod over cracks and stomped on litter, never once “making things even.” And what happened? A manhole cover exploded. “With one part of my brain I knew I hadn’t caused that to happen by not evening things out, but it’s this ‘better safe than sorry’ feeling, you know?” she said. “Doing these things has such a low cost,” just a little extra attention as she walks and a somewhat odd gait, but really, it seems like a small price to pay to hold off calamity.

  So does her subway compulsion. When the train screeches into a station and the conductor blares out the name of the stop, Leah feels anxiety rising up through her body and gripping her windpipe. She feels compelled to touch the nearest pole before she exits, “once with my left hand and one with my right,” she told me matter-of-factly. “Just thinking about not doing that is terrifying. If I don’t do it, bad things will happen to the people I love.”

  Anxiety in All Its Forms

  For years the American Psychiatric Association wrestled with the taxonomy of OCD, sort of like musicologists debating whether to classify Bob Dylan as folk musician or rocker. The third edition of its Diagnostic and Statistical Manual, published in 1980, lumped OCD with anxiety disorders such as generalized anxiety and panic disorder, since like those it is marked by an overwhelming sense of fear and apprehension and is often accompanied by sweating, elevated blood pressure, and a racing heart. For the DSM-IV, published in 1994, OCD remained an official anxiety disorder.

  By the early years of the new millennium, however, as scores of expert committees worked on the DSM-5 (published in 2013), some psychiatrists had come to doubt that classification. The debate became somewhat esoteric, but it started with revisionists questioning how central anxiety is to OCD. One camp argued that anxiety is the cause of the obsessive thoughts and compulsive behaviors. The competing camp held that anxiety is a symptom of the obsessions, the emotion that acts as a bridge between them and the compulsions: a thought such as “huh, the world is covered in germs” triggers anxiety and that anxiety drives the brain to seek any way of defusing the aversive feeling—namely, by executing a compulsive behavior. The second camp won. The recognition that anxiety is not the primum mobile of OCD but, instead, an intermediary force that arises from obsessions and drives compulsions became an argument for wresting OCD out of the “anxiety disorders” category and making it a standalone one.

  The committee was also swayed by the fact that anxiety disorders and OCD arise from different brain circuitry. Most anxiety disorders involve the amygdala, which generates our sense of fear, and related circuitry. OCD, in contrast, reflects overactivity in what has been dubbed the “worry circuit,” which (as I explain more fully in Chapter 11) includes the frontal cortex and the striatum, structures that in healthy brains play a role in ritualized behavior as well as error detection. Crucially, this hyperactive circuit is not seen in any other mental disorder. Thanks to recent discoveries like these, the psychiatric association kicked OCD out of the anxiety disorders and designated it a separate mental illness.

  With washing and checking compulsions, the content of the anxiety (Fred might be freezing beside the sherbet!) leads logically to how to defuse it (open the door of the Sub-Zero). But other compulsions, especially those you’re sure must be performed in order to keep things right and your family alive, have no logical connection to the content of the anxiety. These are odd rituals such as touching things or stepping in a certain way, or mathematical compulsions that your brain has convinced you will ward off catastrophe. “Magical” compulsions like these are often in
visible to the outside world: thoughts trigger the intolerable anxiety, and only thoughts can counter that anxiety, in a neurological cage fight—as Carli showed me.

  Mental Compulsions

  Carli had emailed me that she’d be the one in cut-off jeans and robot T-shirt, so she was easy to pick out of the crowd approaching the corner of Bryant Park, where we’d arranged to meet that Friday evening in July. Climbing the stairs to the snack kiosk, I asked her, “What will you have to drink?” Which made her think, twenty-two. After a few seconds, she managed to ask for bottled water, to which I asked, “Still or bubbly?” Which made her mind seize on thirteen. And when I said, “I bet we can find some chairs up there,” she thought, thirty.

  Those are the numbers of letters in the words I spoke to her.

  A writer and editor, Carli was diagnosed with OCD when she was sixteen, but it had burrowed into her brain years before that. In fourth grade, she told me, she began counting the words in sentences people spoke to her, doing the calculation as automatically as people who sight-read music translate images on a page into finger positions on a piano. Soon she began counting the letters. The chorus of Jon Bon Jovi’s “I’ll Be There for You”? Ninety-three characters. Apostrophes count as one. There are rules to these things, needless to say.

  She also feels compelled to make lists of “alls”—all the states, all the campuses of the University of California (Berkeley, Irvine . . . ), all the public colleges in Ohio, all the episodes of a television show (she can name the 117 of The Brady Bunch), all the dorms at the Massachusetts Institute of Technology, all the majors MIT offers, each of which is numbered and which she proceeds to reel off for me (Environmental Engineering is 1; Mechanical Engineering is 2; Materials Science and Engineering is 3 . . . ). When she forgets one she feels an anxious incompleteness that begs to be filled in. If she is not at a computer to look up the single missing item? She’s frozen. “Once when I couldn’t remember the seventh of the Seven Sisters, I lay in bed half an hour and couldn’t do anything until I remembered Vassar,” Carli said as we fended off panhandlers popping out of the dusk like fireflies. “If I don’t think of it my cat will die.”

  As best she can remember, there was no acute triggering event. Instead, her mental compulsions arose from the conviction that something awful would befall her or her family if she did not count words and then letters in spoken sentences, or items on a list. It was “just a thing nagging at my brain,” she said, an anxiety that would build to a crescendo if she didn’t execute the compulsion. Counting words and letters in the sentences she heard in school made it as hard to learn math, history, and the rest as if she were trying to swim while playing bongos. She got through college on the strength of her writing talent and sheer force of will.

  It isn’t just counting. Reading or hearing the word cancer triggers anxiety that someone she loves will develop the disease, producing an irresistible compulsion to counteract the power of the dread word by invoking a magic eraser: after Carli Googled “thyroid cancer” when a friend was diagnosed with it, she immediately had to Google “ulcerative colitis.” The less-awful disease erases the power of cancer, she believes (yes, it has to start with c). Now that the color pink has become the symbol of breast-cancer awareness, whenever she sees it her eyes have to drink in any other color, to wipe away the pink. “October—when breast-cancer awareness month makes the whole world look like it’s swathed in bubble gum—is, you will not be surprised, a tough time for me,” she said. “Every time I see pink I have to do a quick ‘colitis.’ ”

  For sufferers of OCD, new compulsions come, and sometimes old ones go, for reasons experts cannot explain. There is little research on why someone feels driven to execute one compulsion and not another. Typically, OCD attaches itself to something already there, either from one’s own life or from something seen only fleetingly. For Mark Henry, it was a film.

  Soon after he and his family moved to another state when Mark was eleven, he happened to watch the 1973 movie The Exorcist. Before long, he began to think the unfamiliar, creaky new house was haunted. But he knew just how to keep the demons at bay: look into a mirror in a certain way whenever he passed one. If he was rushing out of the bathroom and failed to do so, the anxiety welling up in his throat seemed to fill every molecule of his body, and he had to run back and perform the mirror magic.

  Soon, mirrors were not enough, and Mark had to add to the demon-deterring rituals: walking through a door a certain number of times, until it felt right; putting on his clothes a certain way until he felt that the supernatural had been averted for another day. This last was considerably more onerous than the mirrors and doors, and Mark frequently found himself taking off his school clothes, underwear and all, so he could do it right: he had to think “positive thoughts” while dressing, and if the tiniest negative thoughts strayed into his consciousness he had to start again. “It was an ambiguous but clear feeling of dread,” he said. “My heart would pound and I had to pace back and forth.”

  One morning, performing his clothing ritual, he couldn’t finish. He was frozen to the closet floor. The next day he was in a psychiatric hospital, his frantic parents beside themselves with terror over what had befallen their son. Mark stayed until the family’s insurance ran out, but he received little more than custodial care; treating OCD requires intense sessions of cognitive-behavior therapy, and few hospitals offer that.

  In his midthirties, Mark found himself in the grip of yet more compulsions. He was cleaning out some heating ducts in his new apartment when he developed, out of the blue, a compulsive need to de-germ everything in sight. He became convinced that his clothing was irredeemably infested with fiberglass particles, so he threw out every last shirt, sock, boxers, and jeans. The feeling that his hair follicles were packed with particles so overwhelmed him that he shaved his head, the better to give the contaminants an unobstructed path out. He couldn’t look at his sheets and blankets without seeing microscopic asbestos fibers dance before his eyes; they went in the trash, too. He felt his car was contaminated, so he sold it. The apartment itself seemed to be crawling with contaminants, so he moved into a hotel, changing rooms once he felt the contaminants build up. The only clothes he could stand to have against his skin were silk, which somehow felt less contaminated. “I was like a runaway freight train, with one compulsion running into another,” he recalled of that time.

  Mark, who runs an OCD support group, knows the theories about what causes the illness, how there’s likely a genetic component and that traumatic experiences can push a susceptible person into the abyss of OCD. Shala Nicely’s brush with death taught her brain that the world is a deeply dangerous place, and that to survive she needed to see danger everywhere. Mark’s brain processed danger somewhat differently. One evening when he was about seven, he wanted to watch Pink Panther cartoons at the same time that an older relative was settling down for the evening news. A sharp “No!” wasn’t enough for him. He grabbed Mark by the ankle, dragged him like a felled deer up to his bedroom, and beat him with a belt. “As a child, you can’t process what’s happening to you,” he told me. “OCD makes you feel there are some things you can control. When I was doing my mirror ritual, or my clothing ritual, for those brief moments I felt, yeah, I had done this thing and I had managed to keep the house from being possessed. The anxiety that came over me and made me do the ritual felt no different from an actual, visible, physical threat like the terror that I was going to be beaten again. I couldn’t stop the actual threats, but I could make the terror I felt from the other ones go away.”

  Like Mark, most people with OCD go years before receiving an accurate diagnosis. That seemed odd; how hard can it be to identify a desperate need to wash your hands every few minutes or check the door locks hourly as OCD? But of course, OCD isn’t always this stark. Both primary care doctors and clinical psychologists do pretty well identifying contamination- and symmetry-driven compulsions as OCD, but when the disorder takes a different form, especially one driven b
y “just right” obsessions, the rates of misdiagnosis are as high as 50 percent in primary care. Clinical psychologists don’t do much better: a 2013 study by researchers at Yeshiva University in New York found that when a random sample of 2,550 American Psychological Association members were given OCD vignettes and asked how they would diagnose someone with the symptoms it described, 39 percent failed to detect OCD.

  Scrupulosity

  Not to minimize the torment of feeling that fiberglass particles have infiltrated your scalp, as Mark believed, or that your mother is one uncounted letter in a sentence away from cancer, as Carli did, or that the world is one untouched subway pole away from mishap, according to Leah. But then there’s burning in hell for all eternity. In the form of OCD called scrupulosity, the triggering anxiety involves religion or morals, and the resulting compulsions are of a whole other magnitude of misery: they are meant to avert not piddling little worries like whether you left the door unlocked, but the certainty that if you do not do this particular compulsive act exactly right you will be condemned forever to the fires of Hades.

  At the OCD meeting in Atlanta, Ted Witzig, a pastor and clinical psychologist at Apostolic Christian Counseling and Family Services in Morton, Illinois, led an informal session on scrupulosity. He asked the thirty people sitting in a circle what had brought us to his session. One man recounted how he felt compelled to drive the twenty miles home in the middle of a workday to ask forgiveness from his wife; he had told her the weather forecast called for sunny skies, but he just saw a fluffy white cloud float overhead. The thought that he had lied to her—and yes, he was convinced it was a lie—“feels as real as real and as urgent as urgent,” he said. The young man next to him was convinced that if he did not attend mass every Sunday and follow every dictum of Catholic law, he was going to hell, probably sooner rather than later. The middle-aged woman was paralyzed with anxiety that she “would do something against the Bible or the Church,” and so read and re-read it so she would not forget to, for instance, say the proper number of Hail Marys.