Keeping the Demons at Bay

All photos courtesy of Carla Winterbottom

For years it’s been assumed that the onset of a catastrophic mental illness would result in an inevitable and irreversible downward spiral, and for lots of folks that’s true. But a fairly new school of thought, called the Recovery Movement, has emerged to challenge this notion at its core. It contends that even the most serious mental illnesses, like schizophrenia, can actually be beat.

To many this sounds impossible, largely because of the degree of “crazy” it takes to get full-blown schizophrenic, but also because recovery model tenets are deeply counterintuitive. Instead of concentrating only on the symptom, recovery focuses on the person “behind” the symptom. Where clinical care often emphasises medication, recovery incorporates a patient’s hopes, dreams and creative interests. At the heart of it all is the process of social interaction – aka psychosocial rehabilitation – the supposed engine of this model.

Several studies, prime among them researcher Courtenay Harding’s 1987 “Vermont model study”, suggest that the process of recovery through socialisation is more than possible, though not scientifically understood.

On an institutional level, however, the movement has many worried. Some dismiss it as bunk. Others fret that it’s moving too fast. The Veteran's Administration, the largest provider of mental health care in the country, for example, is in the process of reshaping the entirety of its mental health services to fit recovery-orientated care, and yet as a movement little to no consensus exists on its implementation.

A slew of pressing questions and serious challenges await. In the meantime though, the movement has levelled its own sort of challenge to us, as a society, asking that we reconsider the way we deal with mental illness, and rethink what we deem possible for those who suffer from it. And in considering this, I don't exactly know why, I can’t get my mind off Wesley Willis.

Good old Wesley Willis. Long dead and, by many, poorly remembered.

Born into poverty and family discord in Chicago’s south side, Willis went on to become an outsider artist and a musician with, in my opinion, one of the coolest punk sensibilities of all time. He began hearing “demons” at the age of 26 after his mother’s boyfriend, an abuser named Roger Lee Carpenter, shoved the barrel of a gun to the side of his head. The voices demeaned him. They called him a “jerk”, a “bum” and an “asshole”. And for the rest of his natural life they did their best to put him down and make him feel like a piece of shit.

But they didn’t win. Through it all Willis continued to draw oddly beautiful pictures of the Chicago skyline and the coursing Dan Ryan Expressway, which he would hawk daily along the streets of Chicago. He became obsessed with buses, trains, and roads – things that moved, things that went forward. Over time, a network of friends sprang up around him. They helped him leave behind the ghetto life he so hated, they provided him with places to sleep and they welcomed him into the bustling Chicago arts scene. Eventually Willis began making music, first earning fame with a punk band called the Fiasco, and later as a solo act, singing sometimes crude, often touching, but always hilarious lyrics over lilting keyboard preset melodies. When he died of leukemia in 2003, thousands mourned.

_Willis counting money at a New Year's Eve party, Chicago, 1996_

Willis shattered stereotypes. Unlike many other poor-born people who experience mental illness, he didn’t wind up in an institution, on the streets, or in jail. Instead, he jetted around the country, got to know influential dudes like Jello Biafra and Steve Albini, and for a while was making up to $10,000 a week. All this for a chronically schizophrenic, morbidly obese African American who wrote the occasional song about bestiality. "If it wasn't for me being a rock musician,” Willis once told a crowd at one of his shows, “they'd have me locked up in a loony bin right now.”

It’s an interesting thing, trying to appreciate Willis’ life through the lens of recovery. Certain traits add up, others don’t. For instance, while Willis engaged society in the way that recovery claims is necessary to facilitate healing, he was never able to fully shake his schizophrenia. Carla Winterbottom, a Chicago artist who housed Willis for nearly ten years, said that his demons constantly badgered him. “He would wake up at night and before he was even conscious he would be reacting to the voices in his head,” she told me, adding that this continued straight through until his death.

So is it fair to say that Willis experienced “recovery”? I called Larry Davidson, Senior Clinical Officer and Mental Health Policy Director for the Connecticut Department of Mental Health and Addiction Services, and director of the Program for Recovery & Community Health Department of Psychiatry at Yale University, who helped break it down.

“There are two differing forms of recovery,” he said. “There is a sense of ‘recovered,’ and people can recover. Many more people do recover than we thought, historically speaking. Outcome studies suggest that 45 to 50 percent – some say as high as 60 percent – of people with severe mental illnesses can recover over time and no longer have any residual effects…. And then there’s a second sense of recovery,” he said. “Those who don’t recover fully, but who have found a way to live a gratifying life with the mental disorder.”

It seems Willis fit into the latter of the two camps. And even within it, he was an exceptional case. A chronic rather than paranoid schizophrenic, Willis wasn’t at all afraid to socialise. In fact, he craved crowds. Winterbottom described him as a "total charmer", and his charm, no doubt, was crucial to his success.

“Wes had a very strong support system,” said Tammy Smith, a longtime friend of Willis. Even as he managed his own money and grabbed life by the balls, Smith says he still needed friends to remind him to do “little, necessary things, like brush his teeth or take a shower.”

Willis’s friends often acted as liaisons between him and his doctors. One of Willis’s best buds, Dale Meiners, who played in the Fiasco with him and later recorded his solo work, advocated for Willis when he was in the hospital and eventually helped him step down from some of his psychotropic medication. “He was never properly medicated,” Meiners told me. “Sometimes too much, sometimes not enough. And when life got too tough, he would just walk into a hospital and say, ‘I’m losing my mind.’ They would horribly medicate him and he would take, like, a seven day nap.”

Willis and Carla at home with Wesley's "World's greatest Musician" certificate, 1994

As Meiners explained it, he and Willis were brutally honest with each other. If Willis started acting up, Meiners would tell him to cut it the hell out or get the hell out. This was Meiners’ way of dealing with Willis, as opposed to a “coddling mother”, he said.

It had an even more powerful macro effect, he said:

“When I first met him he would check himself into the hospital every three weeks or every month. And then the more we hung out and the more we had fun and the more he started figuring out how to fit in with, you know, the artsy white crowd, I noticed that he started checking himself in every couple months, and then it was every four months, and then pretty soon he just stopped checking himself in.”

Others noticed the same curative quality that fraternisation had for Willis. Simply engaging someone in conversation could help him tune out his demons, said Kim Shively, a documentarian who co-directed Joy Ride, a truly excellent film about Willis’s life. “A lot of times he would use conversation as a preventative measure to keep the demons at bay,” she said. “He found a way to medicate himself socially, if that makes sense.”

Similarly, Tammy Smith noted that Willis would often play music to quiet the demons. And over time, she added, he learned to stop smashing his portable CD player (something the voices constantly told him to do) by broaching the subject with friends. “The demons are asking me to smash my CD player. Should I smash my CD player?” he would ask his friends. “No, Wes! Don’t!” they would respond, and apparently, after this went on for a while, he stopped doing it altogether.

These are just a few examples of how Willis seemed to train away manifestations of his illness through socialisation. There are surely other aspects to his success that recovery can’t account for – say, his natural predisposition towards gregariousness rather than paranoia, or even more serendipitously, his being in the right place at the right time, meeting the right people, etc.

Perhaps Willis was a unique case – a troubled man, equally gifted, who we cannot hope to draw inferences from regarding the possibilities of millions of other mentally ill people with divergent symptoms. What matters is that he wasn’t shunned or excluded for being different, for being “crazy”. Willis fought for a seat at society’s table and with the help of friends turned it into a throne. Whether or not it’s possible for the rest of the country to step up too, who knows?