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Remembering Billy: The life and death of a Madison man with mental illness
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Credit:Pierre-Paul Pariseau

That I never met Billy Zurlo is, first of all, my loss, and second, surprising. I've known his sister Rosemary and her husband Frank for more than a decade, and over time I've met most other members of their families. But Billy was someone I didn't get to know until after he'd died - starting with his memorial service at the Goodman Center on Dec. 30, 2011.

His passing was sudden but not unexpected. Billy, who lived in Wisconsin most of his life and in Madison since 2004, suffered a fatal heart attack on Dec. 1. He was 51.

Rosemary and her sisters - Billy was the only boy, and the youngest, among five children - suspected he wasn't going to last much longer. He'd been losing the ability to swallow, and his lungs were filling with fluid, causing asphyxiation pneumonia. The doctors wanted to put in a tube, but Billy had refused.

On the day he died, his sister Kathy had taken him to an appointment and dropped him back at the group home where he lived. He had looked tired. He told her, with great pride, that the night before he had eaten an entire gluten-free pizza - with sausage - knowing that she wouldn't approve. She decided not to make an issue of it.

When they parted, Kathy put his arm around her neck and hers around his waist. "We turned and kissed each other on the cheek and told each other, 'I love you,'" she says. It's a lovely last memory.

Billy was born with hypoxic brain injury later found to have caused cerebral palsy and a heart valve defect that wasn't diagnosed until 1999, when he had valve replacement surgery that damaged his lungs. He was also diabetic, type 1, and tended to careen between dangerously low and dangerously high blood-sugar levels.

But Billy's main problem was not his body but his mind. He suffered - that's the right word for it - from mental illness. He was labeled as having bipolar disorder with psychotic features. He made repeated attempts to take his own life, and his grasp of reality was often elusive. Even his perpetual optimism toward the future smacked of delusion. Says Kathy, "He was always believing things would get better for him somehow."

That was easier to believe than to achieve. Billy was never able to keep a job for more than a few months. He had poor impulse control and did stupid things - sometimes even things that were crimes, if you wanted to get technical about it. Some people did, and he spent time in jails and prison.

Billy was a shameless liar - a teller of tall tales, is how his late mother used to put it. He would boast of his athletic exploits, though he was clumsy and uncoordinated. He would imagine himself doing all the things his body wouldn't allow, like riding a Harley-Davidson motorcycle.

At least a dozen times, about as often as he tried to kill himself, Billy ran away, always bound for the same destination: Portland, Ore. It was a place he had been to once as a young man, and it took hold of his imagination. If only he could get to Portland, Billy believed, he wouldn't have to keep taking his meds; he would no longer be mentally ill or diabetic.

Yet always, on his way to Portland, Billy's health would fail him. He'd end up being raced to a hospital by ambulance, or dropped off at an emergency room by someone who'd picked him up hitchhiking. The closest he ever got to his destination was Seattle. Flying him back to Wisconsin cost about $1,000.

Kathy, who has a background in social work, was Billy's guardian in the last years of his life. She talked at the memorial about the answers she'd give when people asked her why she took care of Billy, despite how much of a pain in the ass he often managed to be. He's my brother, she'd say. He needs me.

But there was another, truer reason: She loved him.

So did a lot of other people.

Shining example

At the memorial, my friend Frank made two observations about Billy. He said he'd always felt as though Billy wasn't put together right, in mind and body. And he said that Billy had charisma.

Was that the right word for it? Frank, the husband of a writer (Rosemary is a freelancer for Isthmus), turned this over in his mind. Charisma was something he'd come to associate with power and good looks, neither of which applied to Billy. And yet, wherever Billy went, he'd strike up conversations and people would remember him. "How's Billy?" Frank was always being asked.

Kathy told the story of when she and Jim, her husband, took Billy on a Caribbean cruise, a few years back. Onshore on Aruba, all sorts of people were greeting him by name. Turns out he'd been buying drinks for everyone at the bar earlier, using his room key to run a tab. Joked Kathy, "Billy was always very generous with our money."

Billy loved music. He'd listen when he was upset, and when he was happy. His hero was Neil Young. Kathy made sure that Billy, over the last quarter-century of his life, never missed a Neil Young concert that was within easy driving distance. In 1999, she got Billy a backstage pass to a fundraiser Young played in Milwaukee for a school that works with brain-damaged kids. (Two of Young's sons have cerebral palsy; his daughter, like him, is epileptic.) Billy shook his hand and got his autograph.

"It was heaven for him," recalls Kathy, "one of the biggest events of his life."

Kathy put together a CD of some of Billy's favorite music, which she gave away at the memorial. Most are songs written by Neil Young and performed by others. She also gave away his prized collection of T-shirts, bearing the names of bands, travel destinations and, of course, Harley-Davidson.

And then there was the slide show, of pictures from throughout Billy's life - from a toddler, to a young boy giving a peace sign, to a middle-aged man with a quizzical mustache. These were displayed to the accompaniment of one of his favorite songs, Pink Floyd's "Shine On, You Crazy Diamond."

Forget about how playing Dark Side of the Moon as a soundtrack to The Wizard of Oz makes for some awesome coincidences. Serendipity doesn't run any deeper than the playing of this song at Billy Zurlo's memorial:

You were caught on the crossfire
Of childhood and stardom
Blown on the steel breeze.
Come on you target for faraway laughter,
Come on you stranger, you legend, you martyr, and shine!

Never quite right

When Billy was growing up, his father often called him a retard. Billy didn't learn to walk as soon as other kids, and then was awkward and rigid. It took him longer to talk, and he was in speech therapy through fifth grade. He was put in special education classes.

In high school, Billy began to show signs of being mentally ill. He had trouble relating to his peers, and he'd do odd, compulsive things, like listen to the same song over and over again. In 1979, when he was 19, Billy and a friend stole a neighbor's car; Billy, who never learned to drive, was convicted of a felony. His mother sent him packing.

Over the next few years, Billy was on his own, traveling from state to state, often getting into trouble. Kathy would get reports on him from time to time - calls from hospitals and jails. She'd send him money for bus tickets so he could come home.

"He'd take the money and disappear again," she says with a long laugh. "That little bastard."

Once during this time, Billy dropped in to see her, when she had an internship in Colorado. He stole some T-shirts that belonged to her and some cameras that had belonged to their father, who died in 1975. Then he disappeared again.

Kathy later did criminal background checks in some of the states she knew Billy had been - Colorado, Utah, Wyoming, North and South Dakota, California. She found he'd been arrested 13 times for shoplifting and ticketed for such offenses as vagrancy.

In Colorado, says Kathy, Billy was duped by "friends" who gave him $300 to open a checking account, then wrote bad checks for which Billy was blamed. He fled the state.

In 1986, when Kathy and Jim were living in Pittsburgh, where Jim was working on his Ph.D. in mechanical engineering, they got a phone call from a mental hospital in Wyoming. Authorities there had put Billy on a plane to Pittsburgh - "they patient-dumped him," explains Jim - then called to say he was on his way and, by the way, actively suicidal.

When he got off the plane, Billy "looked so bad I didn't recognize him," says Kathy. Jim didn't recognize Billy either, but for another reason - it was the first time they'd met. "I knew she had a brother, but I never expected to meet him," says Jim, who would become a kind of father to Billy.

Kathy, by this time, had earned a degree in community mental-health administration; she spent much of her professional career running group homes. She got Billy into psychiatric treatment, for the first time in his life. In 1987, at Jim's urging, Billy took an IQ test. The results showed that he was of average intelligence. "It was the first time I ever saw him walk with his shoulders held high," says Kathy.

Their father had been wrong.

Life with Billy

For much of the next 20 years, Billy lived with Kathy and Jim - in Pittsburgh, in Indiana, in Washington, D.C., in Connecticut and, since 1994, in Wisconsin, first Milwaukee and then Madison. In most of these places they lived in small apartments, and Billy would sleep on a foldout bed in the den.

A few times, they got Billy his own place, but it never worked out. "He always ended up back with us," Kathy says.

In Bloomington, Ind., they found him a rooming house. As he walked home one night, his blood sugar dropped and he got disoriented. Kathy says he approached a woman to ask directions and tumbled into her. The woman beat him unconscious, then called the cops. Billy spent about three months in jail, charged with attempted rape, before pleading guilty to a lesser charge that let him be released for time served.

In Milwaukee, a caseworker found Billy an apartment in one of the city's toughest neighborhoods. Thugs robbed Billy's apartment and beat him severely, breaking his nose and cheekbone, swelling his head to grotesque size. Kathy and Jim found a blood-stained metal pipe that had been used in the attack and took it to police to be tested for fingerprints; the cops, they say, declined to have this done.

In 1992, Billy returned to Colorado and turned himself in on the outstanding check-cashing charges, which had been weighing on his conscience. He served two years in state prison for that. It was what you might call hard time. "Once again," says Kathy, "he was a target for those who wanted to beat up weak people."

Billy's mental illness had predictable patterns. Often, as his March 23 birthday approached, he would get depressed and try to run away to Portland - or worse. Once, in Pittsburgh, he drank a bottle of vodka and slit both of his wrists; had he been found 15 minutes later than he was, he would have died.

Another time he took a whole bottle of Zantac - an acid reflux medicine - confusing it with Zanax, a powerful anti-anxiety drug. Kathy and Billy both later had a good laugh about that.

"Sometimes," she says, "he was just unbearably stupid."

Billy knew he was mentally ill and given to delusions. In times of lucidity he'd joke about the dumb things he believed when he was psychotic. But aside from the time when he was jailed in Indiana - and Kathy believes Billy's account about how he stumbled in a hypoglycemia-inspired funk - he was never accused of trying to physically harm another person.

Kathy and Jim never worried for their own safety or that of their daughter, Becca, who had Uncle Billy as a constant presence in her life. Billy loved animals and children. And, in the last years of his life, he found a kind of peace and stability.

Coming home

In 2006, Billy moved into Timberwood, a group home on Madison's southwest side. The first time he and Kathy walked in the door, there was a huge pot of soup on the stove, and Billy was welcomed.

Mary Kay Fields, the home's administrator, felt an immediate sense of connection to Bill - she never called him Billy. Bill's sense of connection to his new environment was not so immediate.

"He was a tough customer," says Fields, with obvious affection. "Bill very desperately wanted to belong - everybody does " but he didn't trust that that could happen." He acted like being sent to the home was a punishment, and that it was destined to be temporary. "That this could be turned into something positive, he didn't believe that at all."

Yet that's what happened. "This really became home, and we were really part of his family, and he really came to care," says Fields.

One former resident had spent time behind bars, putting him and Bill on a testosterone-driven collision course for street cred. Both ended up backing down. As Fields puts it, "Rather than struggle over who was the bigger dog in the yard, they decided they were the same size." Bill even began tutoring this man, helping him learn to read and write.

The other men in the home - a clean and comfortable eight-bedroom house originally designed as an senior care facility - liked Bill. They say so when I visit: "He was my friend." "He was a lot of fun."

Fields did more than like Bill. She admired him. "He was my hero," she says with tears in her eyes. "He was so brave." His body and his mind had both worked against him since the day he was born, yet his spirit was never conquered.

Rosemary tells the story of Billy's last psychiatric hospitalization, near the end of his life. Various professionals were discussing his situation. Fields, appearing on speaker phone, was asked for her thoughts. "Bill," she said, "we want you to come home." He did.

One of Kathy's favorite memories is from the cruise ship, in 2003. On the second night they learned that Billy was signed up to sing Neil Young's "Heart of Gold" at the ship's karaoke bar. By the time they arrived, there was a huge and enthusiastic crowd - made up of people who had seen him perform the same song the night before.

The crowd loved him. It cheered him. His singing was terrible. He gave a triumphant repeat performance every night.

Come on you raver, you seer of visions,
Come on you painter, you piper, you prisoner, and shine!

Family affair

A neighbor of mine, Joseph Foth, is a caseworker at Journey Mental Health Center (formerly the Mental Health Center of Dane County). I told him about Billy's story, and he helped put it into perspective.

"Most of the people we work with have an anxiety component in their life," Foth says. "They've lost so much, they wonder what's going to happen next. It's our job to help them recover as much of their lives as they can."

The resources are often inadequate or difficult to access, and caseworkers are stretched. The stigma of mental illness is overwhelming, to where many people with mental health problems feel degraded, like they don't belong. They'll keep it hidden if they can.

Foth wants people to know that mental illness is a medical condition, not a choice. It affects someone in almost every family in the country. It could happen to anyone, at any time, due to illness or trauma.

Most of all, Foth would like to counter the fear, and the "automatic negative reaction" that many people have toward those with mental health problems. "The average person with mental health problems is not dangerous to other people," he says. "Most are just trying to manage their lives."

In many cases, they must do it without help from their families. Foth says only about a third of the people he's worked with have family members who are actively involved in their lives.

Billy was lucky that way. His whole family - all four sisters and their husbands and kids - were part of his life. In fact, Fields thinks Bill was "the glue" that pulled his loving family together. "He gave them their focus."

Kathy Zurlo struggled to get Billy the services he needed. She filed complaints against care facilities and chewed out psychiatrists who spoke to Billy without making eye contact. She fought to have him treated like a human being, not a mental case.

But the amazing thing is that she did it - not because she had to but because she loved Billy, her crazy diamond. Billy's whole family did. They loved him not despite his quirkiness but because of it. They didn't want him to be normal; they wanted him to be happy.

And, to a remarkable extent, he was. "I'll always remember you as smiling," wrote one person on his obituary guestbook.

Billy Zurlo was not a victim. He had his life, his music, his family, his friends, his dreams. And now he's finally made it to Portland.

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