Jerry had a special relationship with his mother. He spent hours with her watching soap operas and shopping. During the twins' early twenties, their relationship with their father soured. According to Alvin, "Father used to say we had minds like snapping turtles. We just bit the wrong things." He became more and more critical of them. Their mother tried to make up for it by taking them shopping. They shopped for everything from bric-a-brac to fine art. When Jerry spoke of his mother and her death, his eyes filled with tears. "I think about her every day, Dr. Frost. Do you think I'll ever see her again? I keep the house just the way it is thinking she might return. If I get rid of anything, it's like giving up on her." He admitted that this was an irrational thought, but not one he could easily ignore. Before she died, she asked him to do two things for her: not to let any of her things be sold to relatives and to look after Alvin. Jerry had fulfilled both of these promises, but at quite a price.
The twins' mother was overprotective and did not allow them to have much contact with other kids in the neighborhood. She preferred to keep them at home, studying. She never permitted other kids to come over and play, fearing they would mess up the house. According to Alvin, "Too much change upset Mother." He remarked that most of the time his mother stayed home, where she felt safe and protected. "She treated our home like a cocoon," he said. Few of the mansion's nineteen rooms were accessible to the twins. Once their mother arranged the rooms the way she wanted them, she allowed no one to use them.
She even refused to let the twins organize their shared room or their dressers. She insisted on doing it for them. She laid out their clothes each day, choosing what they would wear without consulting them. They could keep only a very few clothes in their room. Their closets full of newly purchased clothes were off-limits. Many of these clothes were never worn and still hung in the mansion with the sales tags attached. The house remained much the way it was when their parents died nearly a decade earlier. Jerry visited sometimes, but Alvin did not.
Although the twins occasionally played at other kids' homes and they had friends at school, both felt that many of their peers resented their wealth and their intelligence. Both boys qualified as geniuses and found it difficult to relate to their classmates. Alvin said that the first time their parents noticed their penchant for collecting was when they were three years old. On a walk with their nurse, they filled their "perambulator" with a collection of sticks and leaves. They wouldn't allow the nurse to get rid of any of them. When the boys discovered a particular branch missing on reaching home, they put up such a fuss that the nurse had to retrieve it. The boys also collected other things, such as shells, pinecones, and, later, porcelain figurines. Jerry recalled having great difficulty getting rid of school papers. He still had his first- and second-grade papers stashed away somewhere in his parents' house.
Living in Clutter
Neither Alvin nor Jerry actually lived in the apartments Jerry showed me. They had moved out because living there had become impossible. Instead of clearing some space to live, they simply left everything as it was and moved into other apartments in the hotel. Jerry lived in a small suite that was also filled to the point of being nearly uninhabitable. Mostly, the suite contained a random scattering of papers, clothes, and books, as well as a few pieces of art. As in their penthouse apartments, there were no pathways, and when we entered, we had to wade through a foot of stuff littering the floor. In the kitchen, the piles were not as high, but little of the floor showed. The kitchen sink was full of an assortment of junk and jewelry, with no place to make a meal.
Beyond the kitchen was the bathroom, the floor of which was covered with vitamin bottles. To use the sink, Jerry had to straddle the pile of pill bottles. The bathroom light fixture was broken, but Jerry would not allow anyone in to fix it because he was embarrassed by how the place looked and worried that someone might steal something. He relied on the light from the kitchen to see in the bathroom. He said, "I don't know what I'll do if the kitchen light breaks. I guess I'll have to move to yet another apartment." In fact, he confessed that he was considering doing just that because it had become difficult for him to live in this one. Occasionally, he slept in one of the other rooms in the hotel to which he had a key when he was too tired to navigate this apartment.
The bed was covered as well, and Jerry admitted that he often just slept on the floor, or on the papers and clothes piled on the floor. Sometimes he swept things off his bed onto the floor so that he could sleep in the bed. This left him feeling uncomfortable, though, because he lost the sense of where things were in the room.
Jerry had brought some of his artwork from his penthouse apartment to this one, mostly smaller pieces. One kitchen cupboard was filled with jewelry and a second with crystal vases and decorative glass. Jerry said that there were several larger paintings under the clothes on one side of the room. He explained that he liked to have these works nearby. "These things make me feel safe. This is like my cocoon." It was a refrain we had heard before. He said that when he had gone out of town recently, he had been afraid that someone might come into the apartment and steal his things, so he had piled clothes on top of them, and he just hadn't gotten around to removing them.
Unwittingly, both Jerry and Alvin had repeated their childhood experience of owning a large number of clothes but wearing very few of them. But instead of keeping them neatly packed away in their original wrappings, the twins strewed their clothes helterskelter about their suites. The piles of clothes on the floor had been there for months and in some cases years. Jerry wore none of the clothes from the floor. The few clothes he did wear hung from the upper cabinet knobs in the kitchen. A small armoire built into the wall contained more unworn clothing.
Two years earlier, a heating pipe had burst, and water had leaked throughout the apartment, soaking all of Jerry's things. The paint had peeled and blistered from the water damage. He had let workmen in to remove the soaked papers, but he wouldn't allow anyone else in to fix the pipe or the walls. The apartment had been without heat since then. During the previous two winters, he had slept with a stocking cap and heavy blankets to ward off the cold. Jerry hated being in the apartment and seldom spent time there. He took all his meals at the restaurant downstairs and spent most of his days at his brother's workplace.
Complex Thinking
Though identified as geniuses early in life, neither of the brothers was able to finish college. Alvin complained that his mind was "too difficult to navigate." He went on, "It's like a tree with too many branches. Everything is connected. Every branch leads somewhere, and there are so many branches that I get lost. They are too thick to see through." He said his thoughts came so rapidly and spun from topic to topic so fast that he couldn't keep things straight. He likened it to an old episode of the TV comedy show I Love Lucy in which Lucy and her friend Ethel work in a chocolate factory picking chocolates from a conveyor belt and putting them into boxes. As the conveyor belt speeds up, Lucy and Ethel fall behind. As it continues to accelerate, chocolates collect everywhere, resulting in chaos. The mess resembled not only the twins' minds but each of their rooms as well.
Jerry echoed Alvin's description in a note he sent me.
I think somehow this "paper" situation is like an embarrassing secret—normal people cannot fathom or understand this predicament or overwhelming situation. Also, keeping my important stuff (driver's license, credit card, garage key card etc.) together is a real daily feat! My head has so many spinning plots and my dreams at night are turbulent and unsettling—Every day I wonder if I will ever have freedom from chaos.
Alvin's experience of getting lost in the complexity of his thoughts is common among hoarders. At first we thought that people who hoard might be more intelligent than those who don't. Although that is probably not true, hoarders do appear to think in more complex ways. In particular, their minds seem flooded with details about possessions that the rest of us overlook. Irene frequently commented, "I'm a detail person, not a big-picture person, but I'
ve been saving the details for so long, I need to put them together."
The complexity of thought extends beyond possessions. A curious commonality among people who hoard is how they talk on the telephone: they leave long, rambling, almost incoherent messages filled with irrelevant details. My voice mail records up to six two-minute messages. Often it is filled with messages from a single caller, such as one woman who contacted me recently. At the end of two minutes, when the machine cut her off the first time, the woman still had not gotten to the point of her call. She called back and repeated half of what was in the first message. She described her background and how she thought she might need help, then told a story about a comment her brother had made regarding her collecting. She argued with herself briefly about exactly when he had made the remark, concluding that it had been about Christ mastime. That was the year her mother burned the turkey and it snowed on Christmas Day. The machine cut her off again. In her third message, she apologized for the first two and launched into yet more details about her life. She left her phone number just as her time ran out. She never asked a question or asked me to call her.
Dr. Sanjaya Saxena, a University of California, San Diego, psychiatrist who studies the neuroscience of hoarding, described this tendency as giving "a twenty-minute answer to a twenty-second question." People who hoard often speak in overly elaborate ways, including far too many details and losing the main themes, as with Daniel's tangential stories in chapter 9. It seems as though they are unable to filter out irrelevant details. Each detail seems as important as the next. People with hoarding problems can't sort them out or draw conclusions from them. Alvin tried to explain his predicament this way: "Everything is compelling, like it's attached to something else. I can't interrupt the stream of things without ruining it."
This might explain the problems with decision making that accompany hoarding. Even making simple decisions such as ordering from a menu can be excruciating. Alvin showed me a wad of twenty ties in his room. He said, "I have trouble deciding which of these ties to put on in the morning. I could spend all day just deciding that." Jerry reported similar problems: "If I'm going away for the day, I have to pack six or seven sets of clothes. I can't decide what is too much." Alvin recalled his mother having similar problems. When the boys were young, their parents booked a cruise but nearly missed it when their mother couldn't finish packing. Their grandmother came to the rescue once again and did the packing.
Even filling out questionnaires poses a problem for hoarders. More than once, we have waited for more than an hour for a research participant to complete a ten-minute questionnaire, only to throw out the data because the person wrote a paragraph about each question rather than circling one of the answers provided. Our diagnostic interviews can take six to eight hours instead of the usual two or three, as hoarders provide endless details or sit silently, unable to make up their minds about how much a symptom bothers them. The process of sorting out important from unimportant details is clearly impaired in hoarders, who can't see the forest for the trees. Jerry described it as "like a kaleidoscope—broken pieces that don't fall just right."
Alvin first noticed his difficulty with organizing things when he was nine years old and away at camp. As the other children packed to go home, Alvin remembered sitting alone among his things, trying to figure out how to arrange them in his case and watching the other children leave one by one. Their efficiency startled him, and his own comparative inefficiency distressed him. Alvin's father prided himself on his ability to organize his collections of books, pictures, and magazines. His motto, "Everything in its place," rang in Alvin's head on the trip home from camp. Alvin resolved to do something about his organizing problem and asked his father if he could watch him sort and organize the mail. Perhaps not quite understanding his precocious son's odd request, he refused. The incident stands out in Alvin's mind as a lost opportunity.
Jerry thought little about organizing problems until taking a ten-day trip to visit friends in Vancouver. A week into his stay, his friends hosted a dinner party. Jerry remembered sitting in the kitchen as his friends gave the guests a tour of their home. When they got to Jerry's room, there were gales of laughter. When Jerry asked about the laughter, they told him that they were debating whether he would ever be able to organize the chaos and get all his stuff home. Their reactions to the mess in his room embarrassed and confused him. Alvin had a similar experience when he visited a friend in Chicago. After just four days, his host tried to get Alvin to allow him to hire someone to organize Alvin's room for him.
Other experiences of our clients have led us to suspect that deficits in attention and the ability to stay focused constitute a large part of hoarding. While Jerry and I were in his room once, he said he wanted to show me an article he had clipped out of the newspaper. He knew vaguely where to find it. Before he could find the article, though, he got distracted by a story about a picture of him and Alvin with a member of the British royal family. Next was a story about the jewelry in the sink, another about the inscription on a jewelry box, and another and another. Everything he spotted in his search had a tale he had to tell. In the end, he never found, or even remembered that he was looking for, the original article.
In one of our research projects, we compared people with hoarding problems to people with other mood or anxiety disorders and to people without any kind of emotional problem. We found that most of the hoarders reported frequent childhood experiences of distractibility, attention deficits, difficulty organizing tasks, failing to finish projects, losing things, being forgetful, and talking excessively. All of these are symptoms of attention deficit hyperactivity disorder (ADHD). As adults, the hoarders displayed even more pronounced symptoms. Also as adults, they described a tendency to avoid any work that required sustained mental effort. Jerry is a good example of someone with this problem. He spent almost no time trying to organize his things because the intense effort required and frustration from getting confused caused him to give up. "Everything I do is so hard. I have to think about it so much," he complained.
My Life in Shards
The brothers coped with their inability to keep things organized by turning their living space into storage and simply moving into new living areas. Luckily, they had the financial means to do so. Even so, their new homes filled up so quickly that they lived in perpetually dysfunctional spaces. A week before one of my visits, Jerry got up in the middle of the night to use the bathroom. He tripped over one of the many piles by his bed and knocked over an exquisite Venetian vase. It shattered when it hit a metal case sitting on a pile of clothes. As he tried to step over the pile, he stepped on a piece of glass that lodged in his foot. He could barely walk after digging it out. He admitted that it was buried so deep, he should have gone to the emergency room. Despite the pain and trouble caused by his accident, he had not yet cleaned up the glass. I asked him why.
"I don't know, it just feels so stupid," he replied.
"Have you tried to clean it?"
"Well, I went up there yesterday and looked at it. But I got depressed."
"Can you tell me exactly what you were thinking when you went up there?"
"I thought, How terrible is this? What would my grandparents think? What's wrong with me? How stupid was this? I must be stupid to allow this."
Then Jerry told me about many of the other things that had been broken over the years, including an antique lamp of his mother's, an expensive chandelier, and the wooden sculpture that he broke after my first visit.
"Lots of things have been broken in the past and will get broken in the future," he said. "Then I also think of other things, equally precarious, in my rooms that I should clean up. At that point, I pretty much give up trying."
He concluded, "I have come to this. It's like my life—in shards!"
Cleaning up the glass would have taken less than an hour, but during that time he would have had to endure those depressing thoughts. By not cleaning it up, he could avoid the thoughts, atleast as l
ong as he wasn't in the room. Unfortunately, he had to endure them every night when he returned to the room and every morning when he awoke. With some effort, however, he could distract himself with other thoughts during these times.
I convinced Jerry to let me go with him while he tried to clean up the glass. He was reluctant to face such an unpleasant task but agreed for my sake. He spent about forty minutes on his hands and knees picking up glass shards and sweeping up the dust and other trash with his hands. "My father would pass out at my technique. He was big on systems. Maybe I should get a vacuum sweeper to do this." Yet he continued with his hands. Jerry seemed to experience very little distress during the cleaning, although he did say that if I wasn't there, he wouldn't be doing it. When we are doing therapy with people in these kinds of situations, we seldom do more than talk them through the task of cleaning and sorting. Much of what they need is someone simply to keep them focused. My presence seemed to distract Jerry a bit from the discomfort and kept him working.
Although Jerry threw away most of the broken glass, he set aside two large pieces. He said, "I just want to save these." When I asked why, he responded, "I'm remembering how it looked before it fell. If I throw them away, it's like I'm giving up on it, and I hate to do that. It's like I think maybe somehow it will get back together. I know that's crazy, 'cause it can't, but that's what it feels like. I don't want to give up on it. I guess I just like to know it is there." This sentiment reminded me of how he felt about maintaining his boyhood home: selling it would feel like giving up on his mother.
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