My Friend, the Compulsive Hoarder
My friend after the first big clearing out the kitchen. All photos by the author.

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My Friend, the Compulsive Hoarder

The story of a real-life hoarder who lived a trash-strewn nightmare for years, and a friend who documented his road to recovery.
December 23, 2015, 3:30pm

"Haven't you read my text?" I ask, a bit annoyed.

"No, I've been looking for my phone for a few weeks," he answers. What kind of answer is that?

"You lost it?"

"No. It must be at home somewhere, I can't find it." I've heard a lot of excuses—but this?

Maybe I should have listened closer, then I wouldn't have missed the subtext. I have a vague memory of him saying, "You don't know what it looks like at my place." But I just took that as a sign of someone who isn't with it. But the person I'm talking about is with it. He's a good friend that I've known for five years. He's a colleague and a senior software developer—a technical problem solver that processes the chaos in data and packs it into systems.

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The scene repeated itself a few months after this conversation. He had a new phone by then. Again he told me that he couldn't find it. Again I didn't know what to make of it. I didn't know how big his apartment was because I'd never visited him. Then it occurred to me: why hadn't I? Regardless, it certainly couldn't be so big that you could lose several smartphones in it, never to be seen again. Again I overheard that subdued comment: "You don't know what it looks like at my place."

PUTTING THE PUZZLE TOGETHER

My friend is actually what's colloquially knows as a hoarder—one of an estimated 2.5 million in Germany. (There are believed to be 14 million in the US.) Like the overwhelming majority of those affected, he was unable for a long time to seek professional help—even though the hoarding had gotten to such extreme levels that if was defining his life.

I didn't realize all of this at this point. But over the years of our friendship, pieces of a puzzle had been coming together. He would repeatedly refer to how messy it was at his place. When he told me about his father's tuba on top of his bed and the desk you had to climb over to get through the hall, pieces of a picture started to take shape in my inner eye.

Three years have passed since I formed those first chaotic images in my head. I only really began to understand his problem a year ago, when he first clearly formulated the situation in his apartment. He had been actively trying to fight his way out of the chaos for half a year. I accompanied him on his journey, visiting him at home throughout and getting to know a psychologist from a hoarder help service.

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I'm touched by his story. It's so different than the cliché of the asocial hoarder that many of us have in our heads. We talked about it a lot, and when I asked him if I could write about his story, he was delighted. You need guts to share a story like this, but it could also help right the incorrect image of a not-so-uncommon disorder. He nevertheless said he'd like to stay anonymous, which is why he remains nameless and specific personal details are undisclosed in this article.

For two years, I didn't get that he really did have difficulties keeping his apartment clean, and how big of a problem that was for him, even though he would repeatedly give subtle hints. Because, hand on heart, who doesn't find their own apartment messy? You'll see how easy it can be to slip into this dilemma without immediately realizing that something is fundamentally out of order. There's a fluid spectrum between having a messy house and a hoarding disorder.

After the first big cleanup, you can walk into the living room again.

The story really begins when my friend told me that a chimney sweep needed to get into his apartment, and he couldn't let him in. If he did, he would see the situation inside and tell the landlord. He had also stopped having packages delivered at home so he wouldn't have to answer the door. The obstacle course of junk I'd been picturing in my mind turned into a big question mark. But I still thought he was exaggerating.

THE LIGHTBULB

For a few months, we'd been going for coffee in the morning a few feet away from his apartment in Neukölln. At one of these meetings, I was stirring my espresso macchiato and we were looking in each others' eyes, the way you can with people you see often, and he began talking:

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"There's water leaking into my apartment. I really should tell my landlord, but then someone will have to come in the apartment and then they'll throw me out. What should I do?" I was stumped.

"It can't be that bad," I thought.

"Water already leaked into the ceiling lightbulb, it started crackling a bunch," he added. Okay it's bad. I finally got it.

He brought me the lightbulb and sure enough, it actually was filled with water. In what kind of absurd way would water have to leak out of the ceiling to fill a lightbulb? A persistent leak doesn't really have anything to do with messiness. But not calling your landlord is a typical symptom of people with "order deficiency." And that's how Berlin's hoarder help organization, Freiraum ("Clearance"), describes its clients.

SEEKING HELP

Eventually this organization called my friend. They offer assistance to people who aren't able to achieve order on their own. I already noticed a familiar pattern on its website:

-"Do you avoid letting people into your apartment?" -I've never visited him.

-"Do you dread it when someone comes to read your gas meter each year?" -Wasn't he just talking about that?

-"Do you only open the door a crack when a delivery man comes with a package?" -Seems like I've heard this before.

-"Do you have a lot of bottle openers, scissors and other things that you keep replacing because they keep getting lost?" -How often did he buy a new smartphone?

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It took a few days and some hard thinking until he finally decided to seek help, bracing himself. After making contact, he felt relieved. The organization told him they would come for a visit soon. A few weeks later—he used the time for initial clearance—a team visited his apartment. He realized that the organization isn't just a group of cleaners, but rather a team that offered psychological help and a pedagogical approach to cleaning up.

The results of the inspection were that his floorspace was 65 percent covered. I was still thinking that they were taking furniture into account. My friend was appointed a personal counselor, Ms. Jasmin (whose name has been changed here).

She started to come by every Monday. My friend would take the day off work and they'd clean up together. He reported on their meetings week after week, and it sounded good. They developed cleanup strategies, and practiced them, but they would also discuss issues that led to the situation in the first place. They go back to when my friend had suddenly become a father, and how the relationship with the mother went south, and how he hasn't seen his daughter since then. Hardly anyone even knows he's a father. The same way people don't know about his apartment.

THE VISIT

Then he asked me one day at coffee if I'd like to come up to his apartment. Ms. Jasmin suggested he invite people into his apartment, saying it should help to normalize the situation. He warns me several times that it's going to look really bad. I act cool and am actually not so surprised when I see his totally trashed apartment. Yeah, it looks like the pictures you see when you Google "hoarder" or watch one of those voyeuristic reality shows, where "hell has broken loose" in the hoarder's apartment and they exoticise the hoarder as a freak, whose condition is far from "normal" reality in society.

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The kitchen really does look bad. There's leftover food and a few little creatures running free. Astoundingly, it doesn't smell as bad as I would have thought. For me, the happiness of being allowed into the apartment outweighs the nastiness of the situation. The apartment is looking better, my friend himself is doing better, and my visit helps a bit with what he's processing.

Afterward, he arranges for me to observe one of his Monday meetings. I join him as he's cleaning the kitchen with Ms. Jasmin. She's a young psychologist who is working for the organization while attending graduate school. She originally was interested in helping people who wanted to simplify their lives and then found Freiraum. She jokes that she was able to get over her arachnophobia in this apartment. Humor eases the situation, which isn't an uncommon tactic in this kind of case.

THE CONVERSATION

I try and feel out in our conversation whether there's a pattern she sees in her clients. Social status? Neighborhood? Gender?

None of those are credible indicators, according to Jasmin, but she says singles are definitely the most common group to suffer from order deficiency.

I wonder whether the societal trend of single life in the big city also increases the risk of people needing this kind of help. The psychologist doesn't think it's improbable. The lack of a model family makes it easier to not learn certain skills. Unfortunately, they don't teach that stuff in kindergarten or in school.

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I think about my children, who have their own mini-cleaning supplies that they like use to play with, to remove real dirt from the kitchen floor. So I didn't do everything wrong, apparently.

In the meantime, they're discussing spices. Ms. Jasmin asks why one of the expired spices she threw out is back on the spice wrack. He answers that the spice is only expired because there legally has to be an expiration date on it, but that it's still good.

Jasmin asks him to clearly state if he doesn't want her to throw something away. Ultimately it's always his decision. The conversation seems to be friendly and distanced. Very respectful. They speak formally. I don't even know whether to refer to my friend by his first or last name when I talk about him with her.

After several weeks you can see the back, like the kitchen once used to look.

I learn that people with order deficiency can be distinguished by various symptoms, typically related to acquiring, order, or disposal. Shopping addictions, not knowing how to clean, compulsive collecting—there are many facets. And there are totally differing causes, such as traumatic experiences, simply lacking knowhow, or even somewhat surprising domestic issues that you might have been exposed to. For example, people who have their apartments get broken into and trashed sometimes aren't able to clean up their apartment afterwards.

As various as the causes of order deficiency are, so are the different possibilities for helping people who suffer from it. Is the victim suffering from a psychological disorder? Was there a trauma? Knowing the answers to these questions can help a problem to be worked through concretely, while at the same time carefully allowing the victim to go deeper and to be able to talk about underlying reasons. Obviously having a conversation while cleaning doesn't take the place of formal therapy, but ideally, the apartment and the person will stabilize at the same time, creating the foundation for further progress.

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It hasn't been medically explained, conclusively, whether there's an independent disease at hand, or whether what's going on is a possible symptom of another condition, like depression. In the ICD-10, the WHO's international classification for diseases, hoarding isn't listed as its own disorder. But there are other studies that see things differently. The DSM-5, the American catalogue of psychological disorders (which isn't always undisputed in its classifications), considers hoarding a disorder. But classically, hoarding is seen as a symptom of another disorder. The unclear status of the victim's suffering can also be a problem for those affected and their potential treatment.

But regardless of its medical classification, the first step to betterment is accepting that there is a problem. In a society that makes health and productivity the life goals for every individual, this kind of acceptance of a problem is still associated with shame. Seeing their behavior as a pathology can also be a hoarder's first step to liberation, being able to feel better about their own home and their life, and being able to receive visitors.

While the two of them go through mail in the living room ("Do you still need the election results from student government?"), I think to myself about digital disorder. My inbox flashes before my eyes and I feel the stress of not having answered all of my messages. Ms. Jasmin explains that this isn't really an issue that her organization tackles at the moment. She emphasizes "at the moment." They sometimes help people sort their data and to bring structure to everyday digital life. Because, how are you supposed to keep those things separate these days? The three of us discuss what apps can be used to digitize documents so that you can discard the paper versions in good conscience.

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SAYING GOODBYE TO IDEAS

I remember the dozen binders from college I still have lying around at home. They're filled with photocopies of texts we were supposed to read back then. I always wanted to scan them. For later. While I'm remembering that, Jasmin tells me a story about another client.

A mother called, asking for help for her son, who had a lot of newspapers in the apartment. When Ms. Jasmin showed up for the first visit, the young man very sincerely explained, amongst literal mountains of paper, that he was going to be an author and he was going to have to read all the newspapers for the book he was going to write. She wasn't able to help him, because order isn't just about cleaning up, it's about saying goodbye to ideas.

This sentence hit the mark for me. I also have an idea. Namely, to later take the texts in the binders from college and to write about them. It's been ten years since college. "Later" was a long time ago already. I have to do something, I decide.

Was something here?

The one and a half hours of Monday's visit are up. The three of us go down to the street, each with a garbage bag in their hand. At this point, disposing of trash isn't as difficult as it was in the beginning, when they needed to rent a van to drive to the recycling depot to give back the countless empty bottles.

At home, I grab three binders, throw must of their contents away and take the rest to the office to actually scan it. I can't completely say goodbye to them. But if it stops collecting dust at least, then that's a start. I bring the empty binders to my friend. He could use them. It's a paradox—my refuse could bring a little order to his life.

With the counselor, he practices using different cleaning supplies.

BEING THERE

In the end, I'm happy to have been so trusted by my friend. At this point, I've even brought my son over to my friend's place for breakfast. I was happy to receive the invitation; my son found it "boring."

That's good. After months of cleaning up, the apartment is in a condition where it just looks like a cluttered bachelor pad.

I still get angry at myself for not asking what was up earlier on. And I learned that "hoarders," or better to say "order deficient people" are totally different than you'd imagine form having seem too much reality TV.

They're people battling their problems. We should support them on their journey. I'm happy to have helped a little. Even if that just means being there.

This was translated from Motherboard Germany.