Stuff (27 page)

But along with this gift comes a curse. Alvin's complaint that his mind was "a tree with too many branches" may prove to be the most accurate description of the worst part of hoarding—an overabundance of information paired with an inability to organize it. Disorganization makes what would otherwise be a gift into a seriously problematic, dangerous, and sometimes deadly affliction. Maybe hoarding is creativity run amok.

Irene had struggled with hoarding for more than thirty years by the time I met her. She complained about her seeming inability to control it: "I was born this way, and I'll probably die this way. I see too many options [for things]. I can't control it. My brain needs to be rewired!" Brain circuitry may indeed be involved in the development of hoarding.

In the fall of 1848, Phineas Gage, the foreman of a Vermont railroad construction crew, set gunpowder in a hole in a rock he wanted to clear. He packed sand on top of the powder with a tamping rod, a three-foot-long iron bar that tapered from one and a quarter inches in diameter down to one-quarter inch at the tip. As he tamped, the powder accidentally exploded, launching the tamping rod through Gage's skull. It entered just under his left eye, exited through the top of his head, and landed twenty-five yards away. Miraculously, he survived and lived nearly a dozen more years. Changes in his behavior after the accident made Phineas Gage the first and most celebrated neuroscience case study.

Among many changes in his behavior, Gage developed a "great fondness" for souvenirs. Although little has been recorded about Gage's apparent hoarding, other cases of hoarding following damage to the frontal lobes of the brain have been reported since then. Researchers at the University of Iowa have taken the next step in localizing this effect. They compared brain-damaged patients who began abnormally collecting things following their injuries to brain-damaged patients who did not collect. All of the abnormal collectors had damage in the middle of the front portion of the frontal lobes, while the non-collecting patients' damage was scattered throughout the brain. The prefrontal region of the brain is responsible for goal-directed behavior, planning, organization, and decision making—all activities that represent challenges for people who hoard.

Brain scan studies have added additional information about what is happening in the brains of people who hoard. Sanjaya Saxena found lower metabolism (an indication of the level of activity in that portion of the brain) among hoarders in regions of the brain roughly corresponding to those identified in the University of Iowa study. In particular, hoarders had lower metabolic rates in the anterior cingulate cortex, one region responsible for motivation, focused attention, error detection, and decision making.

Saxena's study examined people's brains while they were at rest, or at least not engaged in a task. Subsequent studies have examined what is happening in the brain when hoarders try to make decisions about discarding possessions. Our colleague Dave Tolin at Hartford Hospital in Hartford, Connecticut, devised one such ingenious experiment. Hoarding patients and a control group who didn't hoard brought their junk mail to the lab. Their brains were scanned while they watched a monitor showing the experimenter picking up their mail and holding it over a shredder. The subjects were then asked to decide whether the experimenter should shred or save the item. In contrast to what happened when their brains were at rest, hoarders had significantly more activity in areas such as the anterior cingulate cortex than control subjects did when trying to make the decision.

Because these areas of the brain are responsible for many of the functions with which hoarders have difficulty, these studies support the idea that something may have gone wrong there. Perhaps Alvin's tree did have too many branches. Although it may seem easy to conclude that hoarding occurs because of dysfunction in these areas of the brain, the science doesn't yet allow us to do so. What happens in the brain
seems
to match what hoarders experience, but that doesn't mean brain dysfunction caused it. The function and even the structure of the brain can change as a result of experience.

Even if hoarding is inherited or driven by problems in the wiring of the brain, people with hoarding problems do seem to be able to learn to control them. I spent several hours working with each of the twins sorting and discarding. Progress was slow, but both were able to sort and discard, and it appeared to me that with effort, they could both learn to control their hoarding. It seemed that these men needed someone they trusted to sit with them while they went through their possessions. Perhaps having someone else there kept their attention focused on the task at hand. My attempts to get them to do this work on their own failed, as had Betty's efforts with Ralph (see chapter 7).

Jerry tried hiring a professional organizer, but he got frustrated by someone else making decisions about his stuff. I tried on several occasions to find a therapist for Alvin and Jerry, but no one seemed good enough for them. They continued as best they could. It was easier for Alvin, who had his business and spent much of his time away from his apartment. For Jerry the situation was more troubling. His stuff had become his life, and although it gave him some degree of pleasure, worrying about it took a huge toll.

Alvin and Jerry's story is a remarkable one. The similarity in their hoarding behaviors, the early onset, and the fact that their mother also hoarded suggests that their hoarding was heavily influenced by genetics. But nurture may also have been at work, as they grew up in a cluttered home with a mother who taught them her ways. At this point, geneticists are betting that hoarding has at least some significant genetic cause, but exactly what is inherited is not clear. One possibility is that hoarders inherit deficits or different ways of processing information. Perhaps they inherit an intense perceptual sensitivity to visual details, such as the shapes and colors of Irene's bottle caps. These visual details (overlooked by the rest of us) give objects special meaning and value to them. Or perhaps they inherit a tendency for the brain to store and retrieve memories differently. If visual cues (i.e., objects) are necessary for hoarders' retrieval of memories, then getting rid of those cues is the same as losing their memories. Whatever is inherited, it is likely that some kind of emotional vulnerability must accompany this tendency in order for full-blown hoarding to develop.

It was my
BIG SECRET
. I always had to make up something to keep my friends from coming over.

—Ashley

Ashley panicked as soon as she walked into the apartment. It was worse than ever. The pathways through the mountains of stuff were narrower than she remembered. The piles were higher, and the closed-off feeling struck her sooner than ever before. "It felt horrible—unnatural," she told me later.
I can't do this anymore,
she thought. She had just gotten away a few weeks earlier—to college and a room that was hers to control. No more walking on eggshells. No more worrying that she might touch or move the wrong thing. She could relax and look after only herself. As she looked around her mother's apartment, she realized that she no longer considered this home.

Children who grow up in a hoarded home are dramatically affected. Their childhoods are markedly different from those of their peers, and their adult lives can be shaped by the experience. Ashley was one such case. She started her sophomore year at Smith College troubled by a variety of things, not least of all worry about her mother. She made an appointment with the college's counseling service and began to talk about her mother's eccentricities for the first time. She was shocked when her therapist recognized her mother's behavior and surprised to find that it had a name: hoarding. Her therapist told her about the work we were doing in studying hoarding. She called me immediately after the session.

Ashley was the kind of student professors love: bright, thoughtful, responsible, and curious. She was quite open with me about her mother's difficulties and about what it was like growing up with them. Eager to learn more about hoarding, she worked in my research lab during her senior year. Not surprisingly, her research project was on the effects of growing up in a hoarded home. Ashley reviewed interviews with more than forty children of hoarders who described their experiences growing up. The information she gathered formed the backdrop for our subsequent studies on the topic.

When I first met her, Ashley was at once relieved and saddened that her mother's condition was a subject of study. Knowing that it was identifiable meant that there was hope that something could be done, but her mother had needed that hope years before. When Ashley's father left, partly because of her mother's hoarding, her mother became extremely depressed. "Just knowing it had a name," Ashley said, "would have protected her and given her some self-respect—knowing that she wasn't a freak of nature." Ashley also thought that if they could have named her mother's condition, she might have been able to discuss it with her mother. As it was, Ashley's attempts to do so always ended in frustration and anger.

She first noticed that there was something "wrong" with her home when she was very young and needed a babysitter when her parents were going out. The entire weekend before the event, Ashley and her parents cleaned like demons. Since her mother would not allow anything to be discarded, most of the stuff was relocated to a studio apartment they kept primarily for storage. Ashley remembered trip after trip to the apartment and a mad rush to the finish. Afterward, the stuff came back.

Major chaos accompanied any planned visitor, so very few visitors ever crossed their threshold. Ashley took these episodes in stride, but her father was frustrated and resentful. He took her aside after one such event and said, "You don't have to live this way when you get older." Ashley wasn't sure whether he feared that she would inherit this behavior and was warning her, or he was apologizing for what she had to endure.

With her house too messy for play dates, Ashley went to her friends' homes. "I liked that," she said. "Their houses were clean." But she always held back a little even around close friends. There was a part of her life that she couldn't share. She felt funny when her friends asked, "Why can't we play at your house?" She made up clever excuses to hide the truth. She didn't think of it as lying exactly—more like protecting. Her parents needed a shield—from what, she wasn't sure, but she knew from the way they behaved when visitors were expected that their home was something to hide. This was, she told me, the worst part of it. She called it her
BIG SECRET
, and she felt obliged to keep it. What's more, she had no words to describe the situation at home. "It's hard to talk about something when you don't know what it is," she said. "I knew things weren't normal, but I acted as though they were." While at camp one summer, she confided her secret to a new friend. She wanted some sympathy and understanding, but instead got what she characterized as "morbid interest—like I had just described a cool bird I'd seen at the zoo." She shut herself off and didn't try again for some time.

When Ashley was young, the house was full of newspapers, books, boxes, and memorabilia scattered everywhere. Her mother liked projects, especially those involving the creative use of things—old squeeze bottles, plastic containers, cardboard, whatever was at hand. She could imagine hundreds of projects for these objects. Her things occupied most of the floor and all of the horizontal surfaces. Still, the family could, with Herculean effort, move enough to make the apartment presentable, at least temporarily. That changed when Ashley was eleven and her father moved out. While the hoarding was not the only problem between her parents, it was a significant one. His departure sent Ashley's mother, Madeline, into a tailspin. The apartment grew even more cluttered, with piles of things beginning to overwhelm the furniture. Making matters worse, the acrimonious divorce resulted in the loss of their studio apartment, so most of the stuff stored there suddenly appeared in their home. Every room but Ashley's was quickly being overtaken by stuff. At times her mother made some headway against the clutter, but the newly cleared space always filled up within a week or two.

Madeline grew increasingly concerned about other people touching or moving her things. Ashley obliged by not touching anything outside her room. She accommodated her mom on nearly everything. If she didn't, the cost was high. Her mother's temper was volatile, and Ashley learned to walk on eggshells to prevent a tantrum. At least her room was her own. She kept it neat and protected her things from getting lost in the sea of her mother's stuff. It was an oasis for Ashley, a place to hide from the chaos.

Ashley's first experience away from her mother came at age thirteen when she went to sleep-away camp for a month. It was freeing for Ashley to be away from home, independent and responsible only for herself. But while she was gone, her mother's stuff invaded her room. Madeline thought that she could use the time to clear out the apartment, and she used Ashley's room as a staging area. She piled things from the rest of the apartment on Ashley's bed. By the end of the month, Ashley's room was full of stuff, and the rest of the apartment looked no better. "I felt bad about that," Madeline admitted later, "and I kept telling myself I'd fix it up, but it never happened."

By the time Ashley returned from camp, all of her things were buried under a thick layer of her mother's possessions. She could barely even walk into the room and had no hope of sleeping there. Since her mother would not allow her to move anything, Ashley effectively lost her room. From that time until her departure for college, Ashley slept with her mother in her mother's bed—an island in a sea of stuff.

Ashley suffered through adolescence. "I couldn't create enough space for myself," she reflected. "With all the hormones and my development, my body was changing, but I couldn't change because I was sleeping with my mother!" Even under these conditions, Ashley didn't rebel. "This was my life. I had to learn to live with it," she said. "I wasn't just her daughter; I was her partner. I had to be the one to fix things. I had to be the responsible one. I couldn't think about myself or the things I wanted." She had grown used to protecting her mother and keeping the
BIG SECRET
, first from the babysitter, then from her friends, and now from her father. When he asked how things were going at the apartment, Ashley led him to believe that they were no different from when he'd left. "Nothing good would have come out of being truthful," she said, but she wasn't sure he believed her. All of this tied Ashley to her mother and left a lasting mark. "I couldn't separate from her," she said, nor did she learn to pursue her own interests. "I still have trouble with that," she said. When she left for college, she worried about how her mother would get along without her. She had gotten used to cushioning her mother from life's blows and being her mother's constant companion. After she left, her side of Madeline's bed was taken over by stuff.