The Blinds Pulled Down

When Noah Green was three years old, a neighbor caught a whiff of rotting food coming from the apartment he shared with his mother, Eleanor. A couple of hours later, concerned policemen were knocking on their door. Eleanor refused to let them in at first. When she finally relented, the police entered to find the home in a horrific state of disorder. Cookware, moldy food, and knives littered the plastic rags that coated the floor. The police found Noah amidst the disarray. A few hours later, Noah was sitting in a police station, crying in his overalls. He spent a couple of weeks with his grandparents afterwards, occasionally visiting his mother in the hospital, but he never really understood what was going on. Years later, Noah shrugs it off with a laugh. He now knows that his mother is what most people would call a “hoarder,” though he doesn’t think the term fits. 

The label “hoarder” presents a strange incongruity. On the one hand, people use it so loosely that nearly anyone could be called a hoarder: those who have “too many” books, “too much” clothing, or “too much” of anything. On the other hand, our culture often sensationalizes and ostracizes those who hoard as if they’re rare outcasts with a strange illness. 

I’ve witnessed both of these extremes firsthand. I first heard the word “hoarder” sensationalized when I was in elementary school, watching TV. During a commercial break, dramatic opera music played as a hand slowly turned a door knob. The words “unbelievable,” “dramatic,” “unimaginable,” and “unnerving” flashed across the screen one by one. Then, the music intensified and the door opened on a shot of a child navigating through ten-foot-high piles of stuff. The screen went black momentarily before “HOARDERS” appeared. Years later, I experienced the other extreme when my disappointed mother walked past the empty “trash” and “donate” boxes outside of my room and called out, “Hoaaar-der!” 

A few weeks ago, confused about these two extremes (and subconsciously suspecting that I had hoarding tendencies of my own), I reached out to Jennifer Hanzlick, the founder of “Clutter Trucker,” a company that helps those with hoarding disorder remove the excess stuff from their homes.  

After helping her grandparents, who experience hoarding tendencies, clear out the clutter in their home, Jennifer realized how physically and emotionally taxing the process was for people with hoarding disorder. She was both surprised and troubled by the dearth of hoarding cleanup services. “Many people are overwhelmed with the amount of things in their homes,” Jennifer said. “They want to get rid of it, but don’t know where to start and need extra help. I started to do a little bit of research, because they always say, ‘If you want to start a business, solve a problem.’ I knew this was a problem, and I felt a strong pull to help out.” 

Jennifer began by explaining that hoarding goes beyond an unwillingness to let go of material possessions. “When I mention this word ‘hoarding,’ people begin to wonder if they have a problem, because, come to think of it, they can’t park their car in the garage because of the things piling up that haven’t been used for years. They might use it someday, so they don’t throw it out.” But Jennifer makes it clear that “hoarding disorder is a serious, complicated mental illness.” According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are four parts of the disorder, which Jennifer described for me: “an excessive accumulation of stuff; extreme difficulty in discarding your possessions and sometimes trash; living spaces cannot be used for their intended purpose; and lastly, it causes distress and impairment.” Plenty of people exhibit one of these tendencies, but, as Jennifer said, “unless you meet all four criteria, you’re not one of the fifteen million people in the United States who struggle with hoarding disorder.”

Since fifteen million people amounts to five percent of the population, hoarding can hardly be considered an obscure phenomenon. Still, its prevalence often goes unnoticed because many of those who struggle with it feel ashamed. “There are more people with hoarding disorder than with Alzheimer’s disease,” Jennifer said. “But you wouldn’t know it. They’re hiding, silently, behind closed doors. With the blinds pulled down, they’re afraid to come out, and they’re afraid to let you in.” 

As Jennifer went on, I only vaguely registered that, statistically speaking, I couldn’t have been very far removed from hoarding disorder. A few hours later, by some wild coincidence, I ran into Noah, a fellow Colorado College student. Still dazed by Jennifer’s story, I couldn’t help but share a bit of it with him. Noah told me that throughout his upbringing he had, at different times, tolerated, embraced, and resisted the hoarding tendencies of his mother.

Jennifer explained that hoarding behavior is often a symptom of trauma or other mental illness. One of Jennifer’s clients did not struggle with hoarding until the year after her husband’s death. Another client exclusively hoarded baby powder, which covered the floor of his apartment in a layer at least a foot high. Jennifer later found out that his last memory of his mother, who died when he was a baby, was of the baby powder she used when changing his diapers.

In the case of Noah’s mother, the hoarding manifested as a result of her history with OCD and anxiety. Before Noah was born, his mother, Eleanor, had lived alone in an apartment for 20 years. No one had ever come in, so it became a world of her own. She was a single mother and Noah was her first and only child, so he was the first person to see her world. During her pregnancy with Noah, the anxiety and OCD that she had struggled with since adolescence worsened and eventually became what Noah called a “horrible fear of the world.” And it didn’t get better once Noah was born. “The excess of things in our home,” he said, “became a kind of protective layer from the outside world, which was scary, uncertain, and out of control—a place where people were trying to get us.” 

Contrary to our culture’s stereotype of “hoarders,” not all individuals who struggle with hoarding disorder are deeply attached to their possessions. “The things around me and on the floor were not even very dear to my mother,” Noah said. “There was a mingled fear of throwing things away and a sense of empowerment or safety that came with my mother’s feeling of control over the seeming lack of control.” By letting everything land wherever it would and deliberately not dealing with it, Noah’s mother had been able to gain a sense of agency in her home environment.

Noah remembered not being allowed to clean any part of the house, or even to throw anything away, which would have meant taking away precious control from his mother. He chuckled, remembering how he used to try to sneak out of his room when he couldn’t sleep, but inevitably his feet would make a loud crunching noise as he tiptoed across the plastic on the floor. Only when his mother was asleep could he throw things away. “I remember this broken jar of mayonnaise on the floor of the dining area. It had been there for weeks, and it was growing mold. I remember that I could neither touch nor pick it up until she went to bed.” As for larger-scale clean-ups, like Noah’s room, for instance, there were points when Noah couldn’t really help himself. But cleaning his room would make his mother very upset. She would say things like: “Noah, now I’m going to have to look through all of the trash.”

Eleanor’s OCD extended to an extreme fear of heavy metals and chemicals, which meant that Noah was neither allowed to brush his teeth nor bathe on his own until he was 13 years old. Every morning and night was like a trip to the dentist. Noah’s mother would carefully brush his teeth before giving him a sponge bath. “Since my mother refused to use actual towels, after giving me a sponge bath, she just wrapped me up like a mummy, using paper towels,” Noah told me with a smile. He was also spoon-fed until he was 11. 

It was very important that the fate of the trash and everything in the home was in Eleanor’s hands. Even if she didn’t catch him throwing things away, she would still hold onto trash bags, hoping to comb through each and every article before deciding what to throw out. She often kept the trash bags for a very long time, saying that she was going to throw them away but that she needed to look through them “just one more time.” It was only when the layer of things strewn on the floor got too thick to wade through that she would throw things away. Noah emphasized that this would only happen once it reached a “critical mass.” Very quickly, though, things just went back to how they had been.

Concerned for Noah’s well-being, his extended family called the Department of Children and Family Services a number of times over the years. For a while, all he knew was that every now and then at school, kind yet serious adults in formal attire took Noah aside to talk to him. As a kid who wholeheartedly loved his mother and felt fiercely loyal to her, when Noah realized that those adults were being alerted by his family, he couldn’t help but think, Wow, my family is really just trying to get in the way of what we’re doing. When the phone rang and Caller ID revealed that extended family was calling, like a synchronized duet, Noah and his mother would pick up the phone at the same time. Eleanor would listen attentively and quietly scribble a script for Noah to cheerfully speak into the receiver. 

For a long time, Noah never told anyone what was going on inside of his home. After all, his family had attempted to change their way of life in such corrosive ways that anyone or anything that tried to intervene was seen as a threat. It wasn’t that Noah’s family was being malicious. But instead of trying to understand Eleanor and Noah, they saw an intractable problem and they ended up trying to separate a mother from her child.

“We put red big tags on [hoarders’] doors and we threaten them,” Jennifer said, exasperated. “We make fun of them and say they’re weird, lazy, dirty, and sad … This only perpetuates the issue and plunges them into an even deeper state of fear and shame—so much so that many of the few who do see therapists for other reasons are too afraid to even tell them about the hoarding.”

Therapy for hoarding disorder is a complicated resource, because while it’s often sorely needed, it’s inaccessible and rarely sought out. People with hoarding disorder often only feel comfortable reaching out for help once they are in a “better place.” It’s only then that they can reach out because, as Jennifer noted, “they aren’t comfortable with accepting help until they feel safe and not threatened.” In a vicious cycle, people often need the confidence that therapy provides in order to get better. But they often don’t even have the confidence to start therapy, much less sustain it. So they end up trapped, lacking not only the confidence they need to get better, but also the confidence they need to start trying.

Jennifer has seen this sort of trapped feeling more than a few times. “When I met Jim,” she told me, “he immediately began to tell me, ‘I don’t know how I let it get this bad … I’ve tried so many times to clean it up, but I can’t make any progress … I was going to see a therapist, but I stopped going … And I could never even tell her about the inside of my house.” At this point in their interaction, Jennifer was still standing outside of his porch. Jim was kind and apologetic, and it was obvious that he really didn’t want Jennifer to go beyond the door, which displayed a sign that read, “Danger: It is a crime to occupy this building or remove this sign.”

Finally, Jennifer gently told Jim that she had to go inside. “I go in, and it’s everything that you and I have, just a lot more of it.” But when she entered the bathroom, she saw several Ocean Spray cranberry juice bottles filled with yellow liquid and buckets filled with bulging, tied-up bags. The plumbing was broken. “Some people see this, and they think it’s dirty and disgusting, but it’s resourceful,” Jennifer told me. She went back out on the porch and sat with Jim as he cried. She told him, “It’s okay, we can clean this up. I do this every day. You’re not alone, and don’t feel bad.”

“The way that I see it,” Jennifer said, “we can either choose to judge Jim or we can choose compassion.” She emphasized that although hoarding disorder is a complicated mental illness, being a Clutter Trucker employee requires neither a psychology degree nor impressive cleaning skills. “There is no specific training. You just have to have compassion, and I really do believe that most people are compassionate by nature. I think that it’s just about allowing that to shine through. That’s really all it is. It’s about being human and allowing yourself to care for someone without judging them. It really shouldn’t be hard.”

When Noah was about 13, he became aware of the world outside of his home and realized how different those two worlds were. The world beyond the safe bubble of their home was, to Noah and his mother, an unfamiliar place teeming with unknown variables. Even when Noah went to school, he followed strict guidelines set by his mother. He carried a baggie with wet wipes, using each one in a very specific order. At lunch, he had to be careful not to touch anything besides his food. “People noticed, and they remarked,” Noah said. “But it’s not like I remained oblivious to how everyone else acted. I saw what other people were doing, and I knew that my mother and I strayed from much of what they did, but the idea was, ‘We’re different and it’s us against them.’” He paused for a second and tried to find the words to describe their relationship. “We were so intertwined and had become so profoundly enmeshed that, for a long time, it was really hard for me to tell the difference between us … There was no real divide between our personal or emotional space.” 

Noah had been his mother’s emotional rock from a very young age. She would tell him everything. Unlike most six-year-olds, Noah had to stay strong for and support his mother, not the other way around. In a reversal to the airline refrain, “Put on your own oxygen mask before assisting others with theirs,” Noah had grown accustomed to taking care of his mother, in order for her to take care of him.

Things began to change as Noah approached his teenage years, and began to want more independence. “I was trying to see the world through my own eyes,” Noah said. “But my mother had created this very rigid, domineering, protective bubble around herself and had extended it to me.” As conflict emerged between him and his mother, so did a sense of intense internal conflict. Noah began to feel that he was betraying his mother and developed a deep self-hatred for failing to be there for her fully.

When tension between what Noah wanted for himself and what he had to do for his mother escalated, he began to push back on her attempts to keep them together all the time. Sometimes the guilt of that small defiance would force him to recite a kind of mantra. In his head and aloud, he would compulsively repeat, I am nothing; my mother is everything. I have failed you.

As Noah tried to juggle being a teenager and his mother’s mental health, he was also dealing with his own set of mental health issues. Noah’s anxiety and panic disorder heightened towards the end of sixth grade, leaving him unable to finish the school year. The next fall, Noah found that he could usually only manage to go to school for three days each week. Later on, there was a 10-month period during which Noah couldn’t bring himself to leave his house. It was only out of desperation that he finally asked his extended family for help and left home to enter a residential treatment program for eight months.

After leaving treatment, Noah went to boarding school. “I remember thinking to myself, I’m going to separate myself completely from my past persona. I’m going to be this new person that I know I can be, that I like—none of the mental health issues and none of the baggage from home,” Noah said. “And you see, when someone asks a question, like, ‘Where are you from? What’s your family like? What’s your history?’ You can only answer so much. So when you’re talking to someone, you create a history for yourself.” Noah created histories for himself that were very much distanced from what he grew up with. “But there were points when there was just so much cognitive dissonance that it would come firing back, and suddenly, I felt very much in this old reality.” 

As Noah has grown, he has learned to embrace a fuller and more honest sense of his experiences and history. For the last couple of years, Noah has been doing a thought experiment: “I go back and revisit all past iterations of self—my child, adolescent, and teenage selves—and I embrace all of those people because they are ultimately just one person,” he said with a smile. “These are all continuous parts of who I am. It took me a long time to realize that I can be who I am now with all the things that have come before.”

Noah’s mother is also doing much better now. Noah speculates that his presence catalyzed her recovery. “I demanded a certain way of life and started to clean more, which became a sort of exposure therapy … It’s painful, especially at first, but over an extended period of time, it’s possible… to become somewhat desensitized. It was a compromise that grew over several years, where she gradually let some of the hoarding behaviors go.”

Regardless of her mental health condition, Noah’s mother is always frank and apologetic about everything that has happened. “She’s fundamentally a very good and lovely person,” Noah said. “My mother knows the ways in which it hurt me and feels badly in almost every respect.”

“I think that just doing away completely with the label ‘hoarder’ would be a good direction to head in,” Noah said. It’s true that the label clumps dissimilar people under an overarching umbrella term in spite of the fact that different hoarding tendencies stem from different origins. “For my mother, instead of describing her as a ‘hoarder’ or ‘someone who suffers from hoarding disorder,’ I would prefer to say that she had a terror of the world and people around her. This fear presented itself in severely obsessive, compulsive thinking which manifested itself in how she built and managed her home environment … It’s a little longer, but it’s more holistic.”

Clearly, Noah has been able to do exactly what Jennifer exhorts us all to do: “Look beyond the clutter,” she told me. “They are people … I can’t stress this enough.” Whenever she first meets up with clients in their home, she focuses on the person, “on who they are, what they’ve done, what their passions are, what they want to accomplish … Are they grandparents? Do they have kids? Do they like to go out? What do they like to do?” Jennifer glowed as she told me, “I can’t tell you how creative, intelligent, resourceful, funny, successful, and kind my clients are.” She paused for a second, frowning slightly. “But nobody will tell you that. They’ll say, ‘My neighbor is so crazy; they have a yard full of stuff.’ And it’s frustrating because if they would just take the time to get to know them and understand the illness, then they could begin to see them as whole people.”

Noah, too, acknowledges that it’s much easier to say, “Oh, they’re just a hoarder,” rather than going through their whole life story. “But I think there’s an expectation incumbent on everyone, that they should recognize that there are many parts of the story. Many times, they really shouldn’t try to form any immediate conclusions, even if that means leaving a person unlabeled and uncategorized.”