Let the light in
Mental-health consumers are changing the system
After you read this, my hope is that you will call your local public television station and request it re-air a particular documentary.
Out of the Shadow is a powerful look at a mother’s struggle with schizophrenia as seen through the eyes of her daughter, award-winning documentary filmmaker Susan Smiley. Although it aired May 7 on KVIE Channel 6 and then three times later on Channel 7, the film debuted in the tough time slot of 11 a.m.
Over a six-year period, Smiley courageously turned the camera on her mother, Millie, herself and her sister to produce what can only be described as a no-holds-barred look at both “the system”—so often inadequate at best in serving the neediest among us—and the roller coaster of emotions that comes with loving someone whose health is marred by a mental-health diagnosis.
But what some define as courageous, Smiley merely describes as unintentionally personal.
“When I went into making the film,” Smiley said from her home in Los Angeles, “I never intended it to be as personal as it turned out.
“I went in as an advocate to tell my mother’s struggle with the mental-health system. The scenes which you might call courageous, I didn’t intend them to be so; they just evolved.”
The film shows Millie between the ages of 57 and 61 years old. She is by turns winsome, irritable, funny, grumpy and childlike. She is fierce in her determination to become independent. But she often seems unaware that her decisions to go on and off her medications—and the turmoil that brings—is what leads to her return to whatever psychiatric hospital she is in at the time. These are the scenes that are the toughest to watch, when Millie is at her most vulnerable.
When confronted year upon year with a mental-health-care system as fractured as the biology that gave rise to her illness, we are sobered but not surprised to witness Millie lashing out against the sheer futility of her situation. Against the new doctors who once again don’t have access to her medical records and start her on yet another new medication. Against the faceless hospital bureaucrats who decide seemingly on a whim to move her from one room to another and even from one facility to another, as if she is simply a cog and not a person.
“Police have harassed me all my life,” Millie says, angrily, over and over again, by way of explanation about a particular forced hospitalization. “I’m always getting … someone’s always whisking me away.”
During a four-and-a-half-year period, Smiley traveled back to her native suburban Chicago to be with Millie 13 times.
There are small, poignant moments, such as when, out of nowhere, Millie says to Smiley, “I have an unhappy face, don’t I?” and her daughter replies, “You have sad eyes.” Looking into the mirror, Millie adds, “I’ll have to make them up again. Get the right medication and put makeup on.”
When dealing with Smiley, Millie can be sweet and docile, moody and accusatory, playful and then angry, often with little time elapsing between each emotion. Smiley, by extension, expresses frustration, exhaustion, humor and, ultimately, hope.
And that is what the audience is left with.
Millie was one of the walking wounded. She was out there way too long, but she made it off the battlefield.
Now, with the right support—the correct medical treatment, supportive vocational training and job support, and stable housing—Millie looks and acts like a new person.
Six months after Millie begins her new job as a dishwasher in a sandwich shop, Smiley comes back to visit. She also notices a positive difference. Millie’s guardian, Tina, confirms it, saying, “She’s been incredibly nice. She’s not paranoid. She’s friendly, articulate. She’s becoming more respectful of herself and of others.”
I asked Smiley if making her film was cathartic for her in any way.
“No,” Smiley said. “Filmmaking is tedious; it’s not therapy. I had therapy for that. What’s cathartic is knowing the film is out there and offering hope and healing about what this illness is to families.”
Much has changed in the 17 years since I began covering the mental-health field, its policies and practices and the people it serves. And nowhere is that more evident than in projects such as Smiley’s, which, more than anything, help to eradicate the stigma still surrounding these no-fault brain disorders known collectively as mental illness.
The prolific rise of the “consumer movement” occurring over the last decade has helped ease that stigma, too. The benefits of that are just starting to be realized, most notably in the passage of the Mental Health Services Act, which voters overwhelmingly supported in 2004 as Proposition 63.
There have been few, if any, pieces of legislation in the last two decades with more promise, more chances to fix the broken system of the past. And that is why it carries such a heavy mantle.
When I began covering mental-health issues as a journalist, my first teachers were the family members and friends who made up the local chapters of the National Alliance on Mental Illness. They were in the trenches, and through their shared struggles—to understand their loved ones’ illness, to access appropriate treatment and to support one another—many became advocates for consumers who did not yet have a voice.
One of my first assignments led me to a local NAMI meeting in Modesto. So, in I walked, notebook in hand, Hat of Objectivity squarely on my head. Despite this mental accessory, I couldn’t help feeling like a schmuck. Who was I to try to plumb these people’s private lives, pry inside their pain, looking for answers to questions that should never have to be asked: Why does my son think Tom Brokaw is speaking to him through our television? Why does our daughter think we’re trying to poison her food, and how can we convince her we are not? My sister says she hears voices telling her to kill herself; why can’t she hear me when I tell her they’re not real? My son went off his meds again and landed in jail; why can’t I stop this cycle?
All seemingly reasonable questions to the untrained ear—except for the fact that these no-fault brain disorders, which often manifest themselves behaviorally, are no more susceptible to rational discussion than heart disease or diabetes. The latter two illnesses, however, typically don’t lead people on the path to homelessness, isolation, fear, chronic unemployment/underemployment and even death when left untreated—or when access to proper treatment is limited or denied.
One of the group leaders, with whom I had made contact prior to the meeting, introduced me and let me say a few words about my purpose there before sharing began, and, to my surprise, no one had a problem with me staying to listen or taking notes, as long as anonymity was protected.
So, that night, I listened quietly, scribbling away in the corner, taking in the stories, marveling to myself at the inner strength of these 12 people who I learned came back week after week to support one another. I remember being surprised and moved by their honesty and openness and the matter-of-fact way by which they recounted the issues that had faced them in the two weeks since they had last met.
I particularly remember one man, the biggest and gruffest looking in the group, talking with me afterward as we walked to the parking lot. He talked to me about losing his wife to suicide; I told him how scared I had been and still was that I would lose my (then) boyfriend the same way. We both had tears in our eyes when we said goodbye.
Reporting on mental-health issues has taught me about humanity and humility. Back then, it was the war at home nobody talked about.
Now, people are starting to talk.
Please, call KVIE or the local PBS affiliate in your area and ask it to re-air Out of the Shadow. Have one of those viewing parties that are so popular now. Before the show starts, ask for a show of hands: OK, who took their head meds today? See how many of us raise our hands. What? It’s a good icebreaker!