The Collyers' story may have been front-page news in the 1940s, but the intense media interest did not carry over to the psychiatric community. Until we began our research, the scientific literature contained few studies and scant mention of hoarding. I (Randy Frost) began that research almost by accident. In the early 1990s, I was teaching a senior seminar at Smith College on obsessive-compulsive disorder (OCD), as I had for many years. OCD has become a relatively high-profile disorder, experienced by an estimated six million people in the United States, perhaps most famously by the late industrialist Howard Hughes, and depicted in movies such as As Good as It Gets and the TV show Monk. In this particular class, I had an unusually inquisitive student named Rachel Gross. Early in the semester, Rachel asked why there were so many studies on contamination fears and compulsive cleaning and checking rituals, but virtually none on hoarding. She brought up a famous hoarding case that had fascinated her since her childhood—that of the Collyer brothers.
Rachel's question evolved into a term paper, a summer project, and then a senior honors thesis. As part of the research, I suggested placing an ad in the local newspaper looking for "pack rats" or "chronic savers." Hoping to get a few responses, we were amazed to receive more than one hundred calls—so many, in fact, that we launched two separate studies. We visited the homes of several of our volunteers and discovered a wide range of clutter, some relatively mild and some quite severe. Our research culminated in the 1993 publication of the first systematic study of hoarding in the journal Behaviour Research and Therapy. The findings from these studies helped shape much of the research to come. The chronic savers we studied were highly perfectionistic and indecisive, having trouble processing information quickly enough to feel comfortable making decisions. They acquired things wherever they went, and every day they carried lots of things with them—"just in case" items they couldn't be without. Surprisingly, they were not alone in their peculiar behavior; most had family members who hoarded as well.
Rachel went on to graduate school to study public health, heading in a new direction. I developed an enduring fascination with this neglected subset of what many consider obsessive-compulsive behavior, and with the people who can't part with the objects they've so avidly gathered.
Up to this time, my research had focused on OCD and the trait of perfectionism. As part of that work, I came to know Dr. Gail Steketee, a well-established scholar of OCD at Boston University. We were already collaborating on several OCD projects when hoarding began to capture my interest. Her reaction mirrored my early response to Rachel's queries: hoarding seemed to be a narrow, fringe aspect of OCD and a dubious area of research. Why study something so rare and esoteric—who would care? But gradually, as I had before her, Gail came to appreciate that hoarding was a substantial and intriguing phenomenon, far more widespread and problematic from a public health perspective than she or I had ever imagined. In our collaboration for this book, I've done the bulk of the fieldwork, investigating and interviewing cases. Hence, the interviews and cases herein are mainly mine, recounted in the first person. The conceptual work, however, has been fully collaborative, and both of us have spoken to and seen more people who compulsively hoard than we could possibly recount. We have experienced awe, the excitement of discovery, and empathy for those caught in the web of hoarding.
The Hoarding Syndrome
In the past decade, we've learned that hoarding seems to be such a marginal affliction in part because it's carried on largely in secret: we think of it as an "underground" psychopathology, occurring most often behind closed doors. Hoarders tend to be ashamed of their disorder and unwelcoming to those who would interfere with their activities. Yet hoarding is far from rare, and Collyer-like cases appear with regularity, so that references to the Collyer brothers can be found in emergency services and legal arenas. Even now in New York City, firefighters talk about a "Collyer house." In New York City housing law, tenants who fill their apartments with clutter and fail to maintain sanitary conditions are called "Collyer tenants." Collyer tenancy in New York and many other cities across the country has become a significant problem.
Most cases of hoarding are not life threatening, and for those who can afford lots of space or help to manage a hoard, collecting may never reach a crisis level. Most with this problem, however, are left depressed and discouraged by the overwhelming effects hoarding has on their lives. For them, hoarding is certainly pathological. In our work, and indeed in most mental health research, distress and dysfunction are the determining factors as to whether hoarding constitutes a disorder in a particular case. If clutter prevents the person from using his or her living space, and if acquiring and saving cause substantial distress or interference in everyday living, the hoarding is pathological. But exactly what kind of pathology is not clear.
Hoarding has been widely considered to be a subtype of OCD, occurring among one-third of the people diagnosed with that disorder. Interestingly, when we flip it around and study only those who complain of hoarding, only just under one-quarter of them report having OCD symptoms. Recent findings have begun to challenge the view that hoarding is a part of OCD and suggest that hoarding may be a disorder all its own, quite separate from OCD, though sharing some of its characteristics. Classic OCD symptoms are associated with anxiety. The sequence begins with an unwanted intrusive thought (e.g., "My hands are contaminated from touching the doorknob"), followed by a compulsive behavior designed to relieve the distress created by the intrusive thought (e.g., extensive hand washing or cleaning). Positive emotions are not part of this OCD picture; compulsive behavior is driven by the need to reduce distress or discomfort. In hoarding, however, we frequently see positive emotions propelling acquisition and saving. We see negative emotions in hoarding as well—anxiety, guilt, shame, regret—but these arise almost exclusively from attempts to get rid of possessions and to avoid acquiring new ones.
Other evidence suggests crucial differences between hoarders and people with classic OCD. The genetic linkage studies show a different pattern of heritability for OCD than for hoarding. Likewise, brain scans reveal a different pattern of cerebral activation for hoarders. Hoarders don't seem to respond to the same treatments as people with classic OCD symptoms, and they show more severe family and social disability, as well as less insight into the nature of the problem.
In fact, the mixture of pleasure and pain hoarding provides distinguishes it from all of the anxiety and mood disorders. In many ways, hoarding looks like an impulse control disorder (ICD). ICDs are characterized by the inability to resist an urge or impulse even though the behavior is dangerous or harmful. In fact, compulsive buying, a major component of hoarding, is considered to be an ICD, as is kleptomania. Because pathological gambling, like compulsive buying, is classified as an ICD, we wondered whether it, too, would be related to hoarding. To find out, we put an ad in the newspaper looking for people with gambling problems. We found that people with serious gambling problems reported problems with clutter, excessive buying, and difficulty discarding things at much higher rates than people without gambling problems. What may unite these disorders, besides a lack of impulse control, is a psychology of opportunity. One gambler from our study described his experience to me: "Seeing the scratch tickets over the counter at the convenience store leads me to think, One of those tickets is surely a winner, maybe a million-dollar winner. How can I walk away when the opportunity is there?" Our hoarders have said similar things about items they've wanted to acquire.
Although the acquisitive features of hoarding look like an ICD, the difficulty discarding and the disorganization do not. The emotional reactions to discarding are more reminiscent of anxiety disorders and depression. At present, there is a growing consensus that hoarding should be included as a separate disorder in the next version of the Diagnostic and Statistical Manual of Mental Disorders. Intensive study and decisions about this plan will take place over the next few years.
The boundaries between normal and abnormal blur when it comes
to hoarding. We all become attached to our possessions and save things other people wouldn't. So we all share some of the hoarding orientation. The passion of a collector, the procrastination of someone who hasn't taken the time to put things away, the sentimentality of one who saves reminders of important personal events—all these are part of the hoarding story. How, when, and why do these otherwise commonplace and normal experiences develop into hoarding? What compels these compulsive collectors to create unlivable conditions for themselves and often for others? Why do they go too far? This is what we seek to explain in this book.
About fifteen years ago, I received a desperate phone call from a woman named Irene. She'd found me by contacting the Obsessive Compulsive Foundation (OCF) and asking for someone who might help her with her hoarding problem. (In recent years, the OCF has experienced a dramatic increase in requests for information about hoarding.) When she learned that I was researching the problem, she literally begged to be included in our study. Irene was fifty-three and had just separated from her husband. She had two children, a thirteen-year-old daughter who was away at boarding school and a nine-year-old son who lived at home. Irene worked part-time as a sales associate for a real estate company. She had lived in her house for more than twenty years. Her husband, an engineer, had been after her for years to get rid of the clutter, which waxed and waned but never went away. Finally, he told her to clean it up or he would leave. She couldn't, so he did. Now she was worried that she would lose her children in the upcoming divorce.
Many people with hoarding problems have a predominant theme to their hoarding, such as fear of waste, the allure of opportunity, or the comfort and safety provided by objects. Irene possessed all of these traits. She is the first of many hoarders you will meet in this book (see chapter 1), all of whom helped us better understand the forces that drive them—and us.
It is no coincidence that most of the people described in this book are highly intelligent. Although hoarding is considered a mental disorder, it may stem from an extraordinary ability. For hoarders, every object is rich with detail. We disregard the color and hue of a magazine cover as we search for the article inside. But if we paid attention, we might notice the soothing effect of the colors, and the meaning of the object would expand in the process. In this way, the physical world of hoarders is different and much more expansive than that of the rest of us. Whether we look at them and see limitless potential, limitless information, limitless utility, or limitless waste, the people in this book are undeniably free of the usual rules that affect how we view and treat our stuff.
HOARDING CARRIES WITH IT an agonizing stigma. We thank the people who so courageously shared their lives with us for this book. We have changed their names and other identifying details that were not germane to their stories in order to protect their anonymity and privacy.
1. PILES UPON PILES: The Story of Hoarding
I attach meaning to things that don't need it.
—Irene
I spotted Irene's home immediately. Despite its commanding view of the countryside from atop a hill, it was dark and gloomy. Overgrown trees and bushes hid much of the house from the street. The paint was peeling, and the fence needed mending. A car parked in the driveway was packed with papers and clothes. I had brought along my student assistant, Tamara Hartl, and as we walked toward the house, we could see boxes, newspapers, clothes, and an assortment of unidentifiable objects pressed against the windows.
We knocked on the front door but got no answer. We found a side door and knocked. Something stirred inside the house. Behind us, a door to the garage opened, and out stepped Irene, slightly overweight and rumpled, with straight brown hair and a friendly smile. She introduced herself with a nervous laugh and invited us in: "You can't get in that way. You'll have to come through the garage." A sea of boxes, bags, ski poles, tools, everything imaginable—all in a jumble, chest-high—covered the entire length and width of the garage. Along the wall was a narrow pathway to the only door to her house that was not blocked by debris.
The foreboding exterior of the house belied Irene's personality. She was friendly, bright, and engaging and very curious about our research. Like others we've interviewed, she was tormented by her situation and demoralized by her inability to do anything about it. Though happy to see us, she worried that she was wasting our time, since her problems were of "no consequence to anyone but me."
In Irene I'd found an extraordinarily articulate and insightful subject. I agreed to work with her as she tried to clear her home. In exchange, she agreed to describe everything she felt and thought during the process and not to filter out any reactions, positive or negative.
Irene lived about ninety miles from my college in Northampton, Massachusetts, which meant a long drive for each visit with her (forty-five visits over eighteen months). Each visit lasted about two hours. Tamara accompanied me on most of the trips. On our way to Irene's home, we'd review what we had learned the week before, and on the way back we'd discuss the visit as Tamara made notes on a laptop. By the last of our sessions with Irene, we had generated a theory for hoarding—a framework for future research and a major breakthrough in understanding the phenomenon.
Some theorists have posited that people with hoarding tendencies form attachments to possessions instead of people. Erich Fromm claimed that a "hoarding orientation" leads to social withdrawal. Hoarders, he suggested, are remote and suspicious, preferring the company of objects to that of people. Indeed, for some people prone to acute social discomfort, possessions can be stable and comfortable companions. Irene, however, defied this categorization. She had a wide circle of friends, some of whom I met in the course of my work with her. They displayed a great deal of affection for her, and she for them. She had a quick wit and a well-developed sense of humor. It was easy to see why people liked her. She laughed readily and was often amused by the ironies of her plight. One day, as she pondered why she had saved a newspaper ad for new tires, she fell into gales of laughter when she noticed the headline: SAVE THIS AD. She was also quick to shed tears when she encountered something sentimental, such as a picture drawn by her son when he was a toddler.
With Irene as a model, the classic definition of hoarding as a socially isolating syndrome appeared to be flawed. One of Irene's favorite things, she said, was to make connections between people with mutual interests. She would frequently give me the names of people she thought would click with me. She planned to give many of the things she saved to friends and acquaintances for whom they seemed suited. Unfortunately, her gift of seeing these connections was a factor in her keeping virtually everything she acquired.
Irene was intelligent and well educated. She seemed to know something about almost every subject and displayed curiosity and a wide range of interests. She had a story to tell about each possession—most of them remarkably detailed and engaging. For instance, one day she found a piece of paper with a name and phone number on it among the pile of things on her kitchen table and excitedly recounted its history: "This is a young girl I met at a store about a year ago. She's Hawaiian and had such wonderful stories about Hawaii that I thought Julia [Irene's daughter] would like to write to her. They are about the same age. She was such an interesting person, I was sure Julia would enjoy getting to know her."
Her face lit up at the prospect of making this connection.
"But Julia wasn't interested. I thought about writing her myself, but I never did. Still, I don't want to get rid of the contact. Julia might change her mind."
I have met few people who are as interested in the world around them as Irene, though I later learned that this attribute is fairly common in people with hoarding problems. As she talked, I could see the way each of her things was connected to her and how they formed the fabric of her life. The advertisement for the tires led to a story about her car, which led to a story about her daughter wanting to drive, and so on. A piece of the hoarding puzzle seemed to be falling into place. Instead of replacing people with possessions, Ire
ne was using possessions to make connections between people and to the world at large.
As we were soon to learn, the hoarding phenomenon is composed of a number of discrete factors, some well hidden and unexpected. But the most obvious factor was the simple problem of accumulation: from a scrap of paper with an unidentified and long-forgotten phone number on it to a broken vase purchased at a tag sale, Irene had great difficulty getting rid of things. The value she assigned to objects and the reasons she had for saving them were many and varied. Irene's beliefs about what should be saved seemed isolated from everything going on around her. She was truly baffled that her son and daughter didn't share her penchant for keeping things. One day, as she went through the mound on her kitchen table, she found instructions for one of her son's toys. "I'll put it here in this pile of your stuff, Eric," she told him when he got home from school. Eric immediately picked up the instructions, walked to the wastebasket, and threw them away. She stopped what she was doing, looking surprised. Eric saw her and responded angrily, "I don't need it. I know how it works." She didn't say anything. A few minutes later, she found a bookmark. "Oh, this has all the book award people on it. Do you want it, Eric? I'll put it in your pile."
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