Film Charts Hardship Of Being A Schizophrenic Brother’s Keeper

We first see Duane Luckow backlit. He’s filming himself with his phone. ​“Hey everybody, can you see me?” he asks. We can’t. But then he turns into the light, and there’s his face, looking concerned. ​“I’m going to give you a little tour of this place,” he says. He shows us a bedroom, clean, well-lit, and very institutional. There’s a teddy bear on the bed. ​“I’m not supposed to be filming this,” he says, but gives us a view out the window, of a courtyard garden. ​“That’s the only thing I have hope for,” he says, ​“that someday I’ll get out of this place.”

At the time of filming, Duane had been involuntarily committed to the Oregon State Hospital, diagnosed with paranoid schizophrenia. He was also charged with a bill for almost $118,000, money he didn’t have. When he was released, he couldn’t go back to his house, which he had stripped, or to his workshop, which had become uninsured. The state found him a place in transitional housing. But with ailing parents, it became clear to his sister, Sandra Luckow, that it was falling to her to help her brother.

This meant several things at once. There was Duane’s struggle with mental illness. There was also the struggle with the mental health institutions and overall healthcare system that, Sandra discovered, would only truly kick in once someone had completely bottomed out, but offered very little to keep that from happening for someone like Duane. In the meantime, the life that Duane had built for himself — a house, steady work as a machinist — was crumbling around him. And for Duane, bottoming out could mean the worst: hurting someone else, or, all too likely, hurting himself.

So Sandra Luckow, a filmmaker, was about to become her brother’s keeper. Which was also when she decided to try to make a documentary about it.

The film, That Way Madness Lies…, came out in 2017 to film festival awards and rave reviews. It has turned out to have a life far beyond its original release, streaming on PBS and being included in curricula for health care workers. And thanks to New Haven-area health care worker, writer, and musician Thomas Wexler, who saw the film at a screening at Yale, it’s going to be screened again — with discussion sure to follow — at Best Video on Sunday, Sept. 15, at 4 p.m.

“I have always felt like severe mental illness has no silver lining,” Luckow said. ​“My impetus for making the film was when my brother called me up and said, ​‘they’ve confiscated my iPhone, I need you to take this phone and expose it to the world,’” she recalled him telling her. She acquired the phone and found about 350 short clips. Some of them were of the inside of the institution where he was being kept. But ​“one of the first things I saw was the filming of the Multnoma Falls thing,” Luckow said — the moment when, standing atop the tall waterfall that is an Oregon landmark, Duane perhaps most seriously considered suicide.

“I didn’t know what I should do with it, legally or ethically,” Luckow said. As a documentarian, ​“I never want to make a movie with anyone who wants to be in a movie.” When she started working on the film, she didn’t intend to put herself in it, nor did she imagine that her brother’s own mental health journey — his personal struggle with schizophrenia, his complex, fraught dealings with health care institutions, and the tolls both things took on his family — would be so difficult. She thought she would be making a story about her brother’s return to normalcy. The story didn’t go that way.

She wrestled with the ​“pros and cons of putting yourself in the movie,” she said, even as she became an integral part of her brother’s story, as the person who had to manage her brother’s case. ​“Once I committed that I may have to be in it,” she said, she brought a camera with her to film some of the more harrowing aspects of trying to care for her brother.

“I think I behaved better” with the camera on, she said, which ​“was a really good thing.” And ​“it helped me cope,” even when she faced the strange self-aware mentality that ​“when something really awful happened,” it would occur to her that ​“this really sucks for me but this is really good for the movie.”

“I did have to have a real heart to heart with myself,” she said. She understood that, in exposing Duane’s vulnerabilities, she needed to show her own as well. ​“I didn’t do anything perfectly,” she said. ​“It was incredibly hard.” And there was no catharsis, ​“absolutely not,” she said, in putting the film together or releasing it. ​“I have to watch my mother die, and my father die,” and ​“my brother living on the streets,” she said.

At the end of the film, Duane ​“came to terms that the state was going to take care of him,” Luckow said. In the years since filming ended, he was arrested several more times, and ended up living with a friend who appears a few times in the film. He has gone back to working on antique motorcycles and cars. ​“He worked on the real-life Aston Martin that is in the James Bond films.” Last October marked Duane’s 60th birthday, and Luckow arranged for a theater to fit 100 of his friends, and ​“we showed his student films on a big screen.”

Amid Portland’s persistent problems of homelessness and drug addiction, Luckow said, ​“Duane has gotten better.” It is notable to Luckow that her brother has reached some equilibrium without medication. ​“The only time Duane has taken antipsychotics has been when he was forced to take them,” she said. ​“I am not anti-medication” but ​“in our situation, it became clear that it only made it easier for people around Duane to deal with him.” She didn’t see a lot of positive effects for Duane himself.

That Way Madness Lies… took home numerous awards at film festivals and gathered a lot of positive reviews. ​“Luckow conveys powerfully the experience of trying to help a relative with​major mental illness — with love, pain, persistence, and frustration,” wrote Psychology Today. ​“If this is a subject matter that has touched your life even minimally, you ought to see this movie,” said The New York Times. But even as she finished the film and began screening it, she worried about whether she had exploited her brother and his story, and whether she had represented him fairly. Duane had filmed himself sometimes, but it amounted to 350 short clips on on his phone, whereas Luckow had ​“six years of filming and choices to make.” That meant ​“the power of framing and structure of the film was in my hands.”

That meant having great responsibility for shaping an audience’s opinions and perceptions of her brother. ​“I was responsible for helping people find a way to understand his process,” Luckow said, and to open up a path for empathy. After watching an early cut, one viewer suggested Luckow start with Duane’s suicide attempt at Multnoma Falls. Luckow rejected that. ​“First impressions of films are essential,” she said.

She realized that viewers needed to see Duane’s accomplishments in life first, to then understand ​“what this illness was robbing him of,” in terms of his material and professional successes, his social life, and his mental state. ​“He’s not relatable in the sense that he’s extraordinary,” Luckow said. But he could be sympathetic.

Luckow was teaching at the Yale School of Art at the time, and showed some early footage to Larry Davidson, professor of psychiatry at Yale School of Medicine. He watched it and ​“his eyes got a little glassy,” Luckow said.

Davidson helped treat people with schizophrenia in the hospital, he said. But ​“this is the first time in my career that I have ever seen it in its natural environment,” she recalled him saying. By the time doctors get to se the patient, ​“the narrative has been curated.”

“Please continue filming,” she recalled him saying.

The film came out in 2018, and Luckow has been humbled by the film’s reception. For starters, it ​“has been used as required viewing to get your social worker’s license in New York,” she said. It has been used in workshops and taught in psychiatric public policy classes, as it adeptly shows that ​“it costs everybody something” when people work with institutions to get the mental health care they need.

To this day, she said, Duane claims to not have seen it. And ​“the group that I was most afraid to show this film to were people who have experienced mental illness.”

The film was tested in just that way at a screening at Yale. ​“I showed the film and Thomas came,” Luckow said. Wexler’s sister is a filmmaker and belongs to a filmmaking network called Yale and Hollywood. At the end of the screening, Luckow recalled, Wexler, who is bipolar, ​“stood up and said ​‘I am someone who has experienced many of the things your brother has experienced,’” and “‘the film shows me how it is perceived from the other side.’” He proposed a screening at Best Video to keep the discussion going about the film and the issues it raises, and Luckow agreed.

Luckow has found that the film also resonates with people trying to care for ailing siblings as she did. Recently she was back in Portland doing fundraising for a new screening, and sitting in the lobby of a theater. ​“This woman comes up to me and says, ​‘are you Sandra?’ ” When Sandra said she was, the woman continued: ​“I have used that film as a brochure and guidebook,” she said, as her own 22-year-old son was diagnosed with schizophrenia. She felt the need to protect him while protecting her assets.

“How’s your son doing now?” Sandra asked.

“Not good. He’s incarcerated for murder,” the woman said.

“Can I give you a hug?” Sandra said.

They embraced and the woman looked up. “‘Oh my God, there’s your brother.’” She recognized him from the film. ​“Could I please meet him?”

The Hazy Horizon

Both Wexler and Luckow hope that screening the film will allow people to ​“engage in this kind of dialogue and conversation,” Luckow said, allowing them to ​“introduce mental illness as a topic of conversation,” Wexler said.

There is much to talk about. In the film, Duane’s story is inconclusive; if anything it seems things could end badly for him. The film’s own ending relies instead on the moment Luckow decides she can’t continue to try to help him, and puts a little distance between them. ​“To me it is maybe a little bit disingenuous,” she said, perhaps especially because their relationship has improved since then. But ​“I had to get my audience out of the film. I had to give them permission to leave.”

But to Wexler, the ending feels honest in another way. ​“It shows the ongoing nature of mental illness,” he said.

Early in his own experience with bipolar disorder, he imagined that some overcoming of it was always just over the horizon. But ​“that horizon is always an illusion,” he said. Instead, he has been left with a nagging worry: ​“how long before this happens again?” How long before there is another disruption to the life he has been carefully building for himself? ​“I and other people with mental illness suffer from a well-placed fear that no matter what we do, at every stage of our lives, with new things we are achieving, some aspect of our mental illness, the mental health care system, or our limited circumstances will show up and cause trouble — compromising what we’re working for,” Wexler said.

“I’m always looking to the future, past that liminal state,” he said. But really, ​“all we have is that hazy, liminal state.”

That Way Madness Lies… screens at Best Video, 1842 Whitney Ave., on Sunday, Sept. 15 at 4 p.m. with discussion to follow. Admission is $10. Visit Best Video’s website for more information.