Stuff (21 page)

Pictures have proved to be a good way to keep track of how clients do in treatment. Photos document progress far better than memory, and reviewing them has been rewarding to our clients later in the therapy as rooms are cleared. For our second session, Nell and I met at the clinic. I showed her the picture of her living room. Her reaction startled me. She didn't recognize her home. It took some time for me to convince her that it was indeed her living room. She was shocked that it looked so incredibly bad. Somehow this two-dimensional image just didn't match the image she had in her mind of her living room as a comfortable and safe place. This picture depicted something abhorrent and bizarre.

We have seen this reaction from a number of clients since then. Seeing pictures of their homes is like seeing through a new lens, the lens most people see through. Although Nell knew she had a problem, when she was at home, everything seemed normal, and she had little motivation to subject herself to the painful process of dealing with her stuff. But when the context changed and she looked through someone else's eyes, a visitor's or a camera's, she saw all too clearly the magnitude of her problem.

In many ways, Nell was lucky. There were some contexts in which she could recognize the problem, and these motivated her to do something about it. For some people who hoard, clutter blindness can be unshakable. This selective blindness allows them to function with less emotional turmoil. Not seeing the clutter allowed Nell to avoid all the unpleasant thoughts and feelings that accompanied it. Of course, it also prevented her from taking any meaningful steps to correct the situation.

Another of our hoarding clients demonstrated her clutter blindness in a slightly different way. At her first therapy session, the therapist asked her to draw an outline of the rooms in her home and to indicate where the clutter had taken over. In her drawing, the living room was a narrow space, more like a hallway. When the therapist visited her home for the first time, he was shocked to find that her living room was nearly three times the size suggested by her drawing. She had drawn a wall where the mountain of clutter began. It was as though the two hundred square feet of clutter packed to the ceiling was no longer a part of her home. Another man simply omitted an entire room from his drawing. The room was completely filled, and he hadn't been in it for years. For him, it no longer existed.

Nell's clutter blindness helped her to avoid distress caused by her hoarding, but she also used hoarding itself to avoid other kinds of distress. One thing she avoided by not cleaning her apartment was a peculiar intrusive thought. Sheepishly, she told me about it one day. "I have a very childlike view of God. I believe he is all-benevolent and would never let me die in this kind of mess." Whenever she began to clean, the thought occurred to her that now God would allow her to die, and the idea terrified her. She had been having the thought, she reported, for more than fifteen years.

As we talked about this thought, she recognized that it was irrational, but still it had a powerful effect on her motivation to clean. Whenever she started to clean, she thought about her own death and the possibility that what she was doing would bring it about. If she stopped cleaning, the distress went away along with the thought. After talking about the fact that
avoiding
cleaning would almost certainly bring about the very thing she feared (she seemed destined to end up like the Collyer brothers, lying dead in the midst of the clutter), Nell was able to start cleaning. The intrusive thought still occurred, but she could dismiss it more easily.

Nell suffered from another common form of avoidance in hoarding. She was a perfectionist, especially when it came to cleanliness and neatness—quite a remarkable irony given the state of her home. Nell had a part-time business cleaning houses (also an irony), and she was very good at it. But when it came to her own home, her perfectionism got the better of her. When she tried to clean something, she did such a thorough job that it took forever to complete. In the end, the time and effort didn't seem commensurate with the result. Doing a half-assed job was equally unsatisfying. Since she couldn't clean the place to her liking, it was less painful to do nothing, and if she was successful in remaining blind to the clutter, the pain was reduced even more.

One feature of hoarding that got in Nell's way was the belief that she could clean and reorganize her home without experiencing distress. From her perspective, this was possible if she simply took the time necessary to go through things carefully. She believed, as do many people with this problem, that the biggest difficulty was not having enough time to go through her newspapers and other items and get what she needed from them. In her view, throwing things away was not a problem once she decided she no longer needed them. All she needed was more time. She could not review one newspaper carefully enough to get rid of it before the next one arrived, however. Papers piled up as she got farther and farther behind. But even if she had taken the time, she may not have resolved her uncertainty over whether she needed to keep the papers. The real problem was not time, but an intolerance of the distress she experienced when she discarded something she was not absolutely certain she would not need.

Even so, she resisted any suggestion that she throw away things such as newspapers without reviewing them for important information. "Don't ask me to do it," she begged. Doing so would make her feel guilty and give her a sense of losing or missing out on something important. She saw no need to experience such distress. In our work together, she wanted me to help her process her possessions in the careful way she had always done it. In a sense, she wanted me to engage in hoarding with her rather than work to change her behavior.

Nell's progress in therapy was slow at first, mostly because her efforts involved spending a lot of time doing the elaborate reviewing and checking that were part of her hoarding. It was not until we did an experiment on experiencing distress that things began to change. Nell had picked up a free newspaper at the supermarket. The newspaper was a community-based publication containing articles and announcements of interest to senior citizens. It had information that might be useful to Nell, but she agreed to discard it and keep track of her distress. The purpose was to see whether her level of distress matched what she expected and whether the distress lasted as long as she thought it would. As we always do in such experiments, I asked Nell to rate her distress on a scale of 0 to 100, where 0 equaled no distress and 100 equaled the most distress she could imagine. Immediately after discarding the paper, she rated her distress at 85. Five minutes after that, it was down to 80. After ten more minutes, it was at 60, and six days later she reported her distress as 15. Although her initial distress was high, in less than a week she had little distress about losing this information. The experiment seemed to rejuvenate Nell. Suddenly, she was able to get rid of more stuff, to discard things without poring over them meticulously. She began to make real progress in therapy.

Another milestone in Nell's treatment occurred when she decided to allow a marathon cleaning session at her home. Her most productive time in working on hoarding occurred when I visited. Most of that time, I simply talked with her and walked her through the steps involved in discarding. Like many hoarding clients, she did not want me touching or deciding about her things. But to make quicker progress, she agreed to experiment with allowing me to make decisions about which things could be thrown away. Normally, we don't make such decisions for clients, but in Nell's case, part of her fear was of other people taking control from her. Facing that fear meant allowing someone else direct control over some of her possessions. After the first such session, I received a frantic phone call from Nell, who was angry with me for putting something in a place where she could not find it. She had found it by the time she placed the call but still wanted to express her displeasure with me. After that, however, she gave up some of her rigid control over her things and allowed me to touch them and even make discarding decisions about them.

A similar thing happened with Irene, who had ended a friendship when someone she'd asked to help her clean had picked up an empty gum wrapper from her floor and discarded it without her permission. By the end of her treatment, when Irene trusted me fully, she allowed me to pick up items and even make decisions about whether to keep some of them.

By the end of our treatment study, Nell had made great progress. Her entry hallway was reasonably clear, her door opened without any problem, and she didn't have to walk on a layer of stuff to get to her living room. The living room itself went from being about chest-high with clutter to having cleared furniture and floor, with only some residual clutter. Open floor space was visible in her bedroom and kitchen as well, and she could once again cook in the kitchen. She had stopped collecting newspapers and magazines. Although Nell had improved, she was still unable to get rid of much of what she had, especially her Tupperware. We moved these items to her basement, out of her main living area, where they formed what she christened "Mount Tupper."

Anxiety, sadness, grief, and guilt are all part of the human experience. When people go to great lengths to avoid them, the results can be devastating. Avoiding distress is a key feature in the development and maintenance of hoarding. It reinforces the belief that the feelings being avoided are intolerably bad, and at the same time it weakens the person's strength to cope with those feelings. Avoidance is a seductive coping strategy that works temporarily but ultimately undermines progress.

When I'm trying to decide what to keep, this outdated coupon seems as important as my grandmother's picture.

—Irene

We could have found the apartment just by following the powerful musty odor that hit us as we stepped out of the elevator. When we got to the door, my guide knocked. No answer. She knocked again, then a third time. I thought of the Collyer brothers, who never answered their door. Finally, a small voice inside said, "Who's there?"

"It's Susan, the social worker. We're here with the cleaning crew. They're here to clean out your apartment."

"Daniel's not here," the voice behind the door told us. "He went to get us breakfast."

"That's okay. We don't need him to be here."

She opened the door just a crack, and the door frame moved, almost imperceptibly. Yet it didn't really move. The world seemed to shift just a bit, and I felt off balance for a moment. The door opened a bit wider, and then I saw them—cockroaches, thousands of them, scurrying along the top of the door to get out of the way.

The door opened the rest of the way. The apartment was dark, and it took a moment to appreciate what was inside. No floor was visible, only a layer of dirty papers, food wrappers, and urine-stained rags. A rottweiler bolted out of the back to see what was going on. He jumped over a pile of dirty clothes—at least they looked like clothes. From the edge of the door, the massive pile of junk rose precipitously to the ceiling, like a giant sea wave. It could have been part of a landfill: papers, boxes, shopping carts, paper bags, dirty clothing, lamps—anything that could be easily collected from the street or fished out of a dumpster. It was one solid wall of trash twenty feet deep, all the way to the back of the apartment. There must have been windows on the far wall, but they were darkened by the broken fans, boxes, and clothing covering them.

Inside the condo the sweet, pungent odor of insects and rotting food enveloped us. Susan had instructed me to wear old clothes that I could throw out afterward. I was grateful for the advice but wished I'd also had a facemask—the heavy-duty kind.

I could feel the cockroaches surrounding me as I stepped in. The walls were coated with their brown dung, and occasionally one dropped from the ceiling onto the piles of debris below. I walked farther in to get a better look at the kitchen, or what I thought was the kitchen. It was impossible to tell, since everything was covered with bags. Food, mostly old and rotting, empty but unwashed tuna cans, and colorful coupons adorned the room. There was a path into the kitchen, though it was atop six inches of trash on the floor. I was afraid to touch anything. I suddenly felt a great deal of sympathy for all the people I'd met with contamination phobias:
This must be what it feels like,
I thought.

Susan, the court-appointed guardian of Edith, who had struggled to open the door for us, had obtained a judge's order for a "heavy-duty cleaning" because she believed that Edith's health and safety were in danger and no more moderate measure had succeeded in improving the horrific living conditions in the condo. Edith wasn't responsible for these conditions, nor was her sister or her son, Tim, both of whom lived with her. It was all her brother Daniel's doing. And Daniel didn't see anything wrong with the place. "All of this stuff we can use," he insisted. "There is nothing wrong with our home."

Indeed, all four adults living in the five-room condo had become so habituated to the squalor that they barely noticed it anymore. Edith insisted that she was "fine," even when her visiting nurses refused to enter her home to help treat her diabetes. The family was so blind to the severity of the problem that social services took the unusual step of appointing a legal guardian for Edith, a competent adult who lived in her own home.

People who live in squalor and don't appear to notice it exhibit the most dramatic form of clutter blindness. How could Daniel not recognize the bizarre and unhealthy state of his home? How could Edith defend him? Most people who hoard save things that don't decay and aren't particularly dirty, such as newspapers or clothes. In our study of hoarding in the elderly, we found that less than a third of the cases lived in squalid conditions. In younger samples, the proportion is even lower. But some people, like the fifty-year-old Daniel, collect dirty and rotting stuff that invites insects and rodents.