Where the TV shows get it wrong on hoarding

A third man installed 10-foot-tall bookcases of cinder blocks and plywood, neatly stacked with hundreds of books organized by subject and author. He suffered from schizophrenia but believed that, if not for his condition, he’d be at Harvard or MIT. To him, the massive library communicated the depth of his intellect. Take the books away and he was just another guy with mental illness.

For these three Boston-area hoarders — and thousands like them in and around the city — their clutter isn’t really clutter at all. The items they collect often assume a magical quality, imbued with meaning and memory. Where others see dangerous, even revolting heaps of junk, hoarders find identity and belonging. Stuff is an extension of the body. Stuff doesn’t let them down like people do. Stuff allows them control in a world that wobbles beyond their drawn curtains.

In the public imagination, people who hoard occupy a peculiar place, objects of both pity and morbid fascination. We’re drawn to tales of hermits hidden among their towering mounds. We gawk at the confrontations and dramatic clean-outs served up by reality-TV shows like Hoarders. We shake our heads at periodic headlines about squalid homes uncovered by police or firefighters.

Hoarding puts the collectors themselves at great risk, restricting access to doors and windows, posing major fire hazards, impeding eating, cleaning, and other essential tasks, and, for many, leading to eviction and homelessness. A Washington TV station reported earlier this year that first responders in Maryland’s Prince George’s County took an average of one hour and 20 minutes to reach a victim in a hoarder’s home, compared with five minutes in a non-cluttered home. Because many people who hoard live in apartment buildings, they can jeopardize their neighbors’ safety, too. A 2010 blaze in a Toronto high-rise spread rapidly through a hoarder’s unit, forcing the evacuation of 1,200 people and injuring 17.

For years, as severe hoarding cases came to light, cities and towns, landlords, social service agencies, and family members focused on just getting the stuff out — often at a cost of thousands of dollars paid to private cleaning companies. Hoarding was seen largely as an expensive, curious nuisance, the fault of lazy, slovenly, or incompetent people.

But lately, a growing body of research, a flourishing nationwide network of local hoarding task forces, and clutter-reduction workshops led by former hoarders around the world have radically reshaped how hoarding is viewed and treated. The condition is surprisingly common, believed now to afflict 4 to 5 percent of people in industrialized countries — perhaps 15 million in the United States alone. That’s three times the number of Americans living with Alzheimer’s disease. In 2013, hoarding was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, giving it official status as a distinct condition.

At the center of this transformation is an unassuming 40-year-old ultramarathoner from Medford named Jesse Edsell-Vetter. About a dozen years ago, Edsell-Vetter was working in the inspections department of Metropolitan Boston Housing Partnership, a nonprofit agency that administers state and federal rental subsidies. He kept seeing people get evicted after their crammed apartments failed inspections, which are a requirement for government-subsidized units. “We keep saying, ‘You’ve got 30 days to clean it up,’ ” he remembers telling his boss. “We go back out and nothing’s changed. And it just feels like we’re missing something.”

His hunch was right. Hoarding, Edsell-Vetter came to understand, is a multilayered mental health condition. Barking at people to clean up the mess didn’t work. Forced clean-outs were counterproductive. Many just began collecting again anyway. Others never recovered from the trauma of watching beloved possessions get carted away. In 2007, the health department in Nantucket halted forced clean-outs when three hoarders in a row died after returning to emptied homes, Randy Frost and Gail Steketee report in their 2010 book Stuff: Compulsive Hoarding and the Meaning of Things.

With the help of Steketee and other specialists, Edsell-Vetter in 2006 launched a novel hoarding intervention program at Metropolitan Boston Housing Partnership. Using cognitive behavioral therapy and intensive case management, he began working closely with people who were at risk of losing their rental vouchers, which are essentially government coupons that cover the majority of rent for low-income tenants. He built trusting relationships and probed their reasons for collecting. He delved into family history and trauma. He put on grubby clothes and helped them sort and discard enough clutter to satisfy inspectors. And then he committed to monitoring them afterward, to make sure they didn’t regress.

It was an entirely different strategy than the clean-up-or-else approach of the past, and its promise was clear right away: All of the people Edsell-Vetter worked with in a small pilot program avoided eviction. Since then, the successes have mounted. A January 2015 study found that 98 percent of the 175 Boston-area hoarders whom the program had helped from July 2011 through June 2014 had maintained their housing. The positive trend has continued in 2015 and 2016, Edsell-Vetter says.

The man with the church bulletins, who was disabled and in his 70s, was 48 hours from eviction when Edsell-Vetter stepped in. Within a couple of months of working together, Edsell-Vetter says, the man passed inspection and kept his apartment. “That, for me, was such a successful moment,” says Edsell-Vetter, who has graying hair, a thin build, and a bright, expressive face.

On any given day, Edsell-Vetter and his team are spread out across Boston and 29 surrounding communities. Together they visit six to 10 hoarding clients a day. With Boston-area housing among the nation’s priciest, this is especially high-stakes work. In most cases, rental subsidies are the only thing keeping tenants from homelessness. Losing a voucher because of hoarding can be devastating; it might be 10 years before another one becomes available. As of April, the wait list to get a federal Section 8 voucher through Metropolitan Boston Housing Partnership had more than 34,000 names.

Now, in addition to expanding his own program, Edsell-Vetter is exporting what he’s learned to other cities. San Francisco, Philadelphia, and Burlington, Vermont, to name three, have built hoarding intervention programs modeled at least in part on Boston, and they’re seeing successful turnarounds, too.

The growth is gratifying for Edsell-Vetter, who has a unique empathy for people on the margins. “He’s a quiet hero that does this work — in the beginning with little support and little regard,” says Christiana Bratiotis, a professor of social work at Oregon’s Portland State University who’s worked with him for years. “And he just kept at it.”

ON A BRIGHT FALL MORNING, I meet Edsell-Vetter on the steps of a nice-looking three-family, a few blocks off a busy square in Boston. The first-floor apartment belongs to a woman in her 60s. Edsell-Vetter has been working with her on and off for a couple of years. “Hello?” she says faintly from behind the door. She’s agreed to let me join them, on the condition that she not be identified in this story.

Her apartment bulges like an overstuffed thrift shop, every surface covered with knickknacks, household items, and piles upon piles of clothing. Full plaid-patterned bags are stacked throughout the living room and hallway. Shirts and dresses hang from racks on both sides of doors, and from a shower curtain rod. The two bedrooms are worse; one appears to be all but impenetrable. She feels ashamed and burdened by all this. She knows she has a problem. She’s increasingly isolated from the world, she says.

The threat of eviction looms. The head of inspections for Edsell-Vetter’s agency has just issued her a letter saying her voucher will be terminated. There’s still time to appeal, Edsell-Vetter reassures her. But not much. “It’s my job to sweat this,” he tells her gently. “It’s your job to keep moving forward.”

They sit down at the kitchen table, in an alcove tucked behind a stack of boxes containing cleaning products, tools, art supplies, 9-volt batteries, rolls of Scotch tape, and spools of ribbon. There’s a metal tray with five bottles of chocolate sauce, at least nine pairs of scissors, and plastic bags full of plastic bags. The counter, save for a small cutting board with ripe bananas, is covered with food boxes and medicine bottles. A magnet on the fridge says, “If bacon is wrong, I don’t want to be right.”

The woman, who is thin and has medium-length hair, wears a purple tank top, jeans, and multicolored socks. She suffers from a medical condition that brings debilitating pain. On bad days, the physical work of cleaning is difficult. Edsell-Vetter’s primary goal is to establish criteria to sort the clothes: Is it the right size? Is it in good condition? Do you love it? Any item that fails those tests might be worth giving away, he suggests. It’s up to her what she keeps. It’s up to him to make sure she knows the consequences of keeping too much.

An empty trash bag for donations sits between them. First up is a pair of flowered pants. She willingly parts with them, and they go in the bag. Then she keeps a pair of khakis. But she’ll give away a second pair of khakis and then a blue dress. There must be hundreds of articles of clothing in the apartment, but Edsell-Vetter tenderly handles every one, as if each skirt, each dress, each blouse is sacred. Outside, a lawn mower buzzes. The smell of freshly cut grass floats into the kitchen from an open window.

“I don’t know what happened,” the woman says, putting her head in her hands. “I wasn’t always like this. Something is wrong.”

“There’s nothing wrong with you,” Edsell-Vetter says, resting a hand on her arm.

With every item, the sorting seems to get a little easier. She’s following the rules they created. She’s keeping about one piece of clothing for every five she’s willing to shed, a good ratio. Edsell-Vetter asks her how hard this process is for her emotionally, on a scale of one to 10. About a five, she says. But being evicted? That’s more like a 100.

The woman longs for how things used to be. She wants to be able to enjoy shopping again, to spend time with a close friend who loves going to stores. Her sister is visiting Boston from out of town. She’d love to have her over, like she once did. But she can’t. Not with her house like this.

“So now we have a goal, right?” Edsell-Vetter says.

“This has been weighing on me so heavily,” she says.

Edsell-Vetter pulls out his phone to schedule a pickup from Big Brothers Big Sisters for the next day. A second charity is scheduled to come soon for another batch. Edsell-Vetter makes a follow-up appointment with the woman for the next week. She has work to do before then. She’s running out of time.

EDSELL-VETTER GREW UP IN RURAL NORTH CAROLINA, in what he describes as a chaotic, physically abusive home with “a lot of mental health and addiction things happening.” He’s reluctant to go into much detail, but says that by age 10 or 11 he felt responsible for holding the household together — figuring out what he and his younger sister were going to eat, how they’d get to school, and to make sure homework got done. The abuse later left him unable to walk without a cane. A dislocated kneecap would require 14 surgeries (to enable his dream of long-distance running).

Craving love and sanctuary, he went searching for them outside the home. As a high school sophomore, he began volunteering for Triad Health Project in Greensboro, which assisted people suffering from HIV and AIDS. Triad offered community and trust and people who cared about him. The work was heavy, but it felt like a release from the demands of home life. It was, he says, “a space to breathe and be myself a little bit.” At Triad, he also learned that when working with vulnerable people, relationships are everything.

As a young adult, Edsell-Vetter learned just how tenuous housing could be, spending months without a permanent home. He crashed on friends’ couches, not knowing night by night where he’d be staying. But volunteering at Triad and later working as a baker at Weaver Street Market, a community cooperative near Chapel Hill, gave him both a purpose and the human connections that he desired. “Part of what I think happens when you grow up in situations that are less than ideal, you figure out who your people are and you figure out how to navigate the world around you,” he says.

All of these experiences inform how he approaches his hoarding work and how he relates to those he’s trying to help. He understands — better than they’ll ever know — the totality of what they’re up against: the poverty, the isolation from friends and family, the absence of a support network. “I have a high tolerance for the environments we’re in,” he says. On one recent visit, the Boston woman Edsell-Vetter is assisting says she’s afraid of getting rid of stuff because she can’t afford to replace it if the need arises. “I can understand being worried about that,” he tells her. He says to call him if she’s ever feeling short on food staples. “We’ll bring you a gallon of milk. We’ll take you to the food pantry. We’d take you food shopping.”

Edsell-Vetter joined Metropolitan Boston Housing Partnership in 2003, a few years after relocating to Boston with a friend. He’d taken some college classes in North Carolina and then at the University of Massachusetts Boston before deciding school wasn’t for him. He wanted to just jump into advocacy work full time. Within a couple of years, the prevalence of hoarding among the agency’s clients became impossible to ignore. Edsell-Vetter flew to a conference in California, where he cornered Steketee, dean of the Boston University School of Social Work and a leading hoarding scholar. They arranged to meet back in Boston. On the plane ride home, Edsell-Vetter says, he sketched out his vision for a hoarding intervention program. From there, over two years, he trained under Steketee and others, learning about hoarding and about cognitive behavioral therapy, a form of psychotherapy that seeks to change behavior and assumptions by exploring the thoughts and feelings that lie behind them.

Edsell-Vetter has since worked directly with hundreds of hoarders. He’s expanded his team to three staff members plus an intern and broadened the universe of clients. The program, privately funded through donors and foundation grants, now helps people in the homeless shelter system whose hoarding prevents them from accessing beds; renters in non-subsidized apartments; and even private homeowners. Across Greater Boston, Edsell-Vetter has become hoarding’s go-to guy, fielding constant calls and e-mails from property managers, city and town officials, first responders, housing inspectors, and family members.

Liz Seelman, coordinator of the Cambridge Hoarding Coalition, has worked with hoarders for years. She’s excited by the new approach Edsell-Vetter represents. Having shared cases with him, she says, it’s clear that this is not just a 9-to-5 job, but a calling. “He will go to such lengths to help people,” she says.

Not that every day brings a victory. Edsell-Vetter has seen parents, presented with a choice of keeping their young children or their stuff, choose the stuff. “Those are the hard days to go home,” he says. To let off steam, he turns on the oven and bakes. His wife and their two sons reap the rewards. “She’s like, ‘You know other houses don’t live like this?’ ” he says. “ ‘You don’t just come home to individual Key lime pies in most places.’ ”

When I ask him what motivates him to run ultramarathons — he competed in a 50K in Maine last year — he says he’s drawn to hard things. “I’m either totally off or full speed,” says Edsell-Vetter, whose voice retains a North Carolina lilt. “There’s not like a middle ground, both in my work and my personal life.”

But there’s another aspect of running that attracts him, too. And it’s the same thing he’s been aching for since childhood: a sense of community. Fondly recalling the 50K race, he tells me about a woman, another runner, whom he met a few miles in. They leapfrogged each other the rest of the way, he says, always asking how the other one was doing, offering to share energy bars, salt capsules, and Gatorade. Just two people running through this crazy world, but doing it together.

FOURTEEN GRAND PIANOS. The jawbone of a horse. A Model T Ford. An X-ray machine. A canoe.

By the time workers finished cleaning out the Harlem brownstone of reclusive brothers Langley and Homer Collyer in 1947, more than 170 tons of clutter had been removed. As Randy Frost and Gail Steketee write in Stuff, the dramatic clean-out captivated the media and the public. Spectators gathered by the thousands at 128th Street and Fifth Avenue to watch. The bodies of both brothers were found buried in the mess.

Yet hoarding remained little understood and little studied for decades afterward. Mental health experts figured it was a response to deprivation — that people who had survived the Holocaust or the Great Depression collected things in case lean times returned. Then Frost, a professor at Smith College in Northampton, and one of his students began probing deeper in the early 1990s. Hoarding, they discovered, was more commonplace and complicated than most people knew. (Indeed, the Collyers, who came from a well-to-do New York family, hardly qualified as deprived.) The shame and private nature of hoarding — it exists behind closed doors, after all — had kept it largely a hidden phenomenon.

Edsell-Vetter then put into practice the research that Frost and Steketee and others at BU’s School of Social Work had done. He came to see hoarding disorder as an iceberg. Above the water is the obvious part: the acquiring, the collecting, the impregnable piles of clutter. Beneath the water is a host of factors and likely causes. Research indicates that many people who hoard have suffered traumatic life events, for example, and that hoarding is hereditary. Many suffer from other mental and physical ailments that contribute to their behavior. Studies have also shown that the brains of people who hoard have diminished executive function capacity, limiting their ability to organize and make decisions. Some have a streak of perfectionism and won’t part with an item unless they’ve found the ideal home for it — the right recipient for a sweater they bought or a suitable facility to recycle a certain material.

Everyone, Edsell-Vetter says, saves things for three main reasons: sentimental value (a quilt sewn by your late grandmother) or utilitarian value (empty jars you might use for cut flowers or catching fireflies) or intrinsic value (a shirt you just like a lot). But while most parents, say, might keep a handful of baby items to remember a child’s early years, hoarders have difficulty recognizing when they have enough. That’s especially true if they’ve suffered trauma — if their children have been removed by the state, or if a child has died. Getting rid of baby clothes would feel like erasing those first years. “That kind of thinking is really common,” Edsell-Vetter says. “It’s absolutely heartbreaking.”

One misconception about people who hoard, he says, is that they all live in squalor, enveloped by animal waste and trash. In fact, only a third of homes he visits are squalid. Even apartments with narrow “goat paths” between piles of clutter can be otherwise reasonably sanitary. Another myth is that hoarding is limited to the elderly. Data from a few different studies suggest the disorder develops in the teens to early 20s, Steketee says. And though Edsell-Vetter works mostly with low-income tenants, hoarding touches men and women at all income levels. Liz Seelman has helped renowned, well-to-do people in Cambridge. “I have been on Brattle Street,” she says.

What really riles Edsell-Vetter up are cable-TV shows like Hoarders and Hoarding: Buried Alive, which select cases for their shock and entertainment value. “It’s essentially a glorified clean-out with a lot of pressure and a lot of shaming,” he says. He allows that the shows create awareness of the problem but says they hinder his work. Judges, firefighters, housing providers, and others will tell him: “On the shows they do it this way. Why can’t you just do that?” Edsell-Vetter has to explain about the iceberg and how damaging and futile it can be to march inside a home and simply force someone to clean up.

A different but complementary approach to treating hoarding with cognitive behavioral therapy, or CBT, is an intensive 16-session workshop led by former hoarders themselves. These so-called Buried in Treasures programs take place across the United States and the world. They were developed in 2012 by Randy Frost and Lee Shuer, an Easthampton man whose collecting had once threatened his marriage. The workshops, which are informed by CBT, have proved successful in reducing hoarding behavior, studies show. “It’s about taking off the clinical hat and putting on a human hat and relating on that basis,” Shuer says. “We’ve all been through something.”

The more Edsell-Vetter has done this work, the more other parties involved in hoarding cases, including city and town officials and property managers, have seen the value of his therapeutic approach. Preventing eviction can be better not only for the tenant but also for the landlord, who avoids paying for cleaning and eviction proceedings. Those costs, according to the 2015 Metropolitan Boston Housing Partnership report, can easily exceed $10,000 per case. By contrast, the agency spends $1,800 on average to manage each hoarding case. Preparing someone to pass inspection typically takes six months.

The wisdom of spending money on case management and preventing evictions is one of the messages Edsell-Vetter is busy communicating to cities around the country. His goal is to teach those cities to fish — to rethink how they approach hoarding and build self-sustaining programs of their own. Together with the quasi-public agency MassHousing, Edsell-Vetter and Metropolitan Boston Housing Partnership this fall are establishing a Hoarding Training Institute to standardize instruction for other communities.

David O’Leary, a hoarding specialist for the Burlington Housing Authority in Burlington, Vermont, says he used to watch the cable shows and get so frustrated by people’s inability to clean up. That was before he started training with Edsell-Vetter. “I was blown away by Jesse,” he says. As of October, the housing authority had worked on 51 hoarding cases, and so far none had ended in eviction.

A group of nonprofits in Philadelphia is also applying Edsell-Vetter’s model, having started training with him in 2015. David Wengert, a social worker at Community Legal Services of Philadelphia and co-chairman of the Philadelphia Hoarding Task Force, says the training opened the eyes of city officials and social service providers and has already prevented a number of evictions. A recent case of Wengert’s resembled one he worked on three years ago. Back then, he couldn’t prevent the eviction. This time, using Edsell-Vetter’s approach, the woman passed inspection with flying colors. “That,” Wengert says, “was the coolest thing ever.”

SHE HOLDS A BLACK, GOLD, and green dress in her hands. Back when she was a ballroom dancer, she used to buy a lot of outfits like this. But she can’t do that anymore, much as she’d like to. With a deep sigh, she drops the dress into a giveaway bag.

“You’re doing it! You’re pushing through!” Edsell-Vetter tells the woman, the one at risk of eviction from her Boston apartment. It’s a week after his last visit.

The dresses and the slacks she once wore to work — these are the hardest pieces of her wardrobe to shed. (An eight on the one-to-10 scale of difficulty, she says.) They remind her of the job she had in human services. Of how she once organized big conferences. Of the time she met President Obama. She is sharp and engaging. It’s easy to imagine her enjoying the workday bustle.

“I’m letting go of a part of me that I felt good about. I had a sense of purpose,” she says. “The more I let go of that work attire, I just feel less and less valuable.”

Edsell-Vetter tells her he understands. It’s a balance, he says. She can keep some of it, just not this much. She brightens when he suggests she donate work clothes to Dress for Success, a nonprofit that outfits low-income women with business attire. “One of Jesse’s great skills is that he is tremendously patient,” Christiana Bratiotis says. “His mere presence on that journey is sometimes the thing that helps the person make the decision to let go.”

The woman and Edsell-Vetter together fill a couple more bags with donations. In goes a beige and brown leopard-patterned dress that she loves. Then a never-worn orange and brown dress. Then a light blue nightgown. She has a sense of determination today.

“I just know I need to do this. I want to do it,” she says. “It’s a matter of understanding and reminding myself that this is not the end-all. It’s not going to stop or destroy my life.”

Edsell-Vetter asks: Won’t fixing this allow her to actually enjoy life again?

“Oh, yes,” she says. “Many things. Many things.”

What she needs now, he says, is daily practice. Every day she needs to fill a few more bags.

“One mile at a time,” he says. “And that’s what you’re doing.”

It may never feel good, Edsell-Vetter tells her. “But it will feel less bad.” It is, he says, “your version of marathon training.”

Scott Helman is a Globe Magazine staff writer. Email him at scott.helman@globe.com and follow him on Twitter at @swhelman.