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Finders keepers

Sufferers of hoarding disorder struggle to let go of past traumas and treasures

Shannon Studer stood in the living room of her mobile home, carried aloft by a rising tide of things.

There were piles of CDs and books, paintings, old Life magazines from the 1960s, Christmas decorations. There were hats, a vinyl record player, old telephones. There were things in tubs, things in piles, things on top of counters.

Studer grasped the paper mache angel that countless people have tried to toss in the garbage. "So many people have tried to huck him on me," she said. "I have to retrieve him every single time."

There were ripped canvases salvaged from the dumpster behind the craft store. There were pieces of scrap metal.

There were plastic bags of jewelry, stored in rubber containers. "It could cover my living room floor," said Studer.

Studer, 52, doesn't look outwardly like a hoarder. She modelled when she was younger. She's neatly dressed and put together. When people first come to her home, "They're kind of shell shocked," she said.

She both hates and loves the piles of things that threaten to completely overwhelm her. "It's like having a meal when you have nothing," she said.

Studer doesn't sleep in her bed - she can't because it's covered with possessions. Instead she sleeps on the couch. She had to pick her way carefully to navigate a path through the living room.

Everything here is a "fresh horde," she said. She cleared most of it out last year then fought with her mother and started filling it again.

Even so, "I'm so much better than I was," she said. "I can't cook in my kitchen sometimes because I've covered the stove and I've blocked the fridge."

Studer said recently the fire chief who visited told her on a scale of one to 10 for hoarding, she's a 10. "It's the worst you can get," she said.

Studer came from a terrible background. She was in and out of foster care as a child and was abused physically and sexually. Violence was part of her life from a young age, as was the drug addiction and mental illness of people around her. She remembers being given money by her mother's boyfriends sometimes to go to the store. "I had to keep my brother safe," she said. "I would take him up and down every floor (in their apartment building) and look in the garbage for pop bottles. We realized there were some really lovely things that you could find."

Dumpster diving was a way Studer learned to survive.

Today she still feels compelled to go into dumpsters - to save things that she feels shouldn't be thrown out or that she could give to someone. She whispered the names of the dumpsters at the big box stores where she finds everything from furniture to craft supplies thrown away in spotless condition. "I could cry about it," she said.

Sometimes she saves things she thinks she could sell, to supplement the meager disability pension she survives on.

Most things don't get sold though. She gives many things away. But others remain stuck in her home. Depression and a constant state of financial crisis send her easily into a tailspin of panic and anxiety.

When that happens, "I'm out there (in the dumpster) big time," she said. "I have to cheer myself up."

After surviving so much, there are times "I felt the only thing left for me was out of the garbage," she said. "It was a blessed place for me."

The first time a man told North Vancouver therapist Don Collett that he was a hoarder, Collett wasn't sure what he meant.

But in the past five years, the former West Vancouver United Church minister and clinical counsellor has become the Lower Mainland's go-to specialist in hoarding disorder. Collett consults on between 30 and 50 cases a year.

Hoarding is a "best kept secret," he said. "It's far more prevalent than people think."

Recognition of hoarding disorder as a specific mental illness is very recent. There's not much research on it and it was only added to the diagnostic manual used by psychiatrists a year ago.

Many people who have problems with hoarding don't even recognize they have a problem, said Sheila Woody, a professor of psychology at the University of British Columbia, who is studying the issue.

The difference between average clutter and a hoarding diagnosis includes both whether rooms in the home can still be used for their original purpose and how distressed a person is at the thought of getting rid of their accumulated possessions.

For hoarders, "the very thought of actually moving the object from one pile to a dispose pile is very distressing," said Collett.

One theory is that part of the brain, which governs decision-making, isn't working properly in hoarders. Or they may assign value to an object - like an old receipt - that seems irrational. "A lot of people have trouble having compassion for somebody who would save these kinds of things," said Collett. "It doesn't make sense."

But heavy-handed actions to clear a space rarely work. "People think (by clearing things out) the problem's going away," said Collett. "It doesn't go away. It comes back twice as fast."

Hoarders tend to be in their 50s, or older. The problem is often more acute for people who are poor. "There's this whole idea of scarcity. If I don't hold it, I'll lose it," he said.

But hoarding can also cut across wide swaths of demographics.

"There are people who have hoarding disorder who live in mansions," said Collett. "I have clients who filled up a cottage. Who filled up a townhouse and moved on to another place."

One time, Collett got a call from a fire department in Port Coquitlam about a middle-aged woman who had filled her townhouse with clothes from the Gap. Most of the clothing hadn't even been taken out of the shopping bags.

Classic items people hoard include newspapers, magazines and pieces of paper. People hoard objects that belonged to family members who have died. Men hoard tools or wood that might be used for a project, while women hang on to craft supplies. Spare computer parts, cables and old electronics are common, "So if something breaks down they could repair it ... it never happens," said Collett.

For people with hoarding disorder, it matters where an item goes when it's disposed of. The garbage is the worst.

"I don't use that phrase, 'Let's get rid of'," said Lynne Davidson, a professional organizer who works with hoarders about 30 per cent of her time. "I say 'Let's see if someone else can use it. Let's give it a new home.'" Getting rid of things is difficult for hoarders. But so is not getting rid of them.

"When you wake up to a mess like that on a daily basis it's very difficult on the brain," said Collett. "The brain wants order. Often people in my groups will say 'My fantasy is to live in a hotel room.'" About 70 per cent of people with hoarding disorder are also depressed, he said.

"They're trapped in this purgatory of not being able to stand it, but not being able to do anything about it. They want to be released from it, but they don't."

Ellen, a pseudonym for a 57-year-old professional woman who has worked with Collett on her own hoarding disorder, knows that all too well.

Today, Ellen lives in a neat walk-up apartment that feels comfortable and cheery. But getting there has been a long journey.

"It's so shameful to have the problem," she said.

When Ellen was growing up, "My mother threw everything away, including my stuff," she said. "She wouldn't understand why you would keep a book."

Her neighbour, on the other hand, had a collection of postcards and fabric scraps. "I could just look at those objects for hours and hours," she said. "I wanted things like that for myself."

Ellen's family moved when she was in high school, leaving her behind to graduate with financial help but little emotional support.

She married young, split up, then later met her second husband, who was considerably older than she was. Although neither of them knew it, he was also in the early stages of dementia. And he was a pack rat.

"He didn't like to shop for clothes but if he found pants that fit he would buy a dozen pairs all at once," she said.

As her husband's illness progressed, the mess in their house grew. Eventually she just gave up trying to clean up. "I left all the dishes on the counter. I left the laundry where he dropped it on the floor.

"Then I started going out collecting objects because my home environment was so ugly."

Ellen found "treasures" in yard sales and thrift shops. As she gathered things, she put them in boxes, intending to deal with them one day. Her husband moved to a care home, and eventually died, but Ellen's problem with things continued.

"I knew I had a problem with stuff," she said.

At its worst, her living room was covered with boxes. "It would look like someone was moving out or moving in rather than actually living there," she said.

"There's just a certain amount of accumulation that it snowballs, that you just can't get past it," said Ellen. "The shame was huge."

She kept the yard as tidy as she could, so she wouldn't attract attention.

Then one day, she heard Collett on the radio and sent him an email, asking for help.

Today, "I'm still working on it," she says. Although she moved from her former home to an apartment, she still pays for five storage lockers containing things she hasn't been able to part with.

"The problem is the stuff that nobody else values," she said, like canned food past its expiry date. "You can't even give it to the food bank."

There are the objects with heavy emotional ties.

The hardest thing she ever got rid of was "all the clothes that I knitted and crocheted for the baby I never had," she said. "I had a hope chest full of things. .. those things were made with love."

She eventually gave them to a hospital auxiliary that sells baby clothes in a hospital gift shop.

Like Studer, Ellen has trouble with the throwaway society we live in. "If we weren't that kind of society, I don't think I'd be in this place at all," she said. "It's the ease of stuff and the constant push of stuff."

Ellen said she finds it weird that people consider hoarders - "people who keep old and broken things" - disgusting, but those who are driving the consumer society aren't regarded as obscene.

"What we find disgusting is completely inappropriate," she said.

Collett also sees a relationship between hoarding and a societal obsession with consumption. Houses are bigger than they ever were and the garages attached to them aren't used to park cars. "All of them are filled with things," he said.

"When I came to the North Shore in 1998 there were no storage places. Now they're everywhere."

Firefighters are often the first contact hoarders have with authorities.

In his 28 years as a firefighter, West Vancouver's Assistant Fire Chief Martin Ernst said he's seen a lot of hoarding.

When he first encountered it, prior to reality TV shows, "we just called it 'overstored'," he said. "We didn't even have a name for it."

Today, about a quarter of Ernst's time is spent dealing with hoarding. There are 15 addresses in West Vancouver alone where hoarding has been noted and six active

files on his desk.

"I hate calling them hoarders. It's such a nasty term," he said. "I like calling them owners. They own the property and they own their lives."

Fire codes set out regulations for most businesses and public spaces. But how someone lives within a single-family home is still largely a matter of choice.

In the past, authorities were more heavy-handed about hoarding. People would be told, "'You must change it. You have to do this. You have to do that,'" he said. "It didn't work."

Now, firefighters realize hoarding is a disorder, said Ernst, and they work in a gentle way to get to reasonable safety standards.

They try to ensure no electrical cords are being squished, that there are passable hallways, working smoke alarms and fire extinguishers.

Hoarded spaces are both more likely to catch fire - through a compromised electrical cord for instance - and more deadly when it breaks out. If a fire starts in a regular home, "you have one to three minutes to escape," said Ernst. In a hoarded home, "you might not even have 30 seconds."

One of the first things Ernst does is talk to people. "We say, 'What's going on in your life?'" he said.

Many hoarders have suffered emotional trauma that hasn't been dealt with, he said. "People build things up around them to protect themselves."

Ernst sees a wide cross section of people who hoard. Years ago, he was called by an apartment manager to a unit occupied by a psychologist and a nurse, and the couple's young daughter. "You'd think they had their lives in order," he said. "But the suite was completely hoarded." The daughter's room was so full of things, she had to sleep on a mat at the foot of her parents' bed.

Ernst said he doesn't aim for perfection. "On a scale of zero to 10, zero is a hotel room," he says. "We walk into fives all the time. I'm not worried about a five."

Often he'll make people do the helicopter test. "If I can spin around with my arms out and have my arms not touch anything, they pass the test," he said.

As a firefighter, Ernst has observed the relationship between people and their possessions intimately. "You realize when you're sifting through the debris (after a fire), how much stuff they have," he said. "When it's ash, there's no turning back. It's gone.

"Most humans have the capacity to move on."

Studer says she's determined to get there too, little by little.

Time has passed since the first visit to her home. This time her kitchen counters are clear. There's nothing piled on her sofa. It's lighter in her home as well - she spent a day scraping off a frosted coating she'd painted on the windows. Now she can see out and a warm breeze blows through the open window, tickling the fringe of a lampshade.

She got rid of so much, she says. But it's hard.

Her bedroom is still crammed and there's everything from an old vacuum on the porch to a plastic horse in the bathtub.

She still has her paper mache angel. He hangs above the porch, a shy smile on his face, with outstretched arms.

Working with hoarding, Ernst said one of his tasks is to help people realize that there is a better life than living under mountains of things. "It just needs to be uncovered."