Reprinted with permission from Schizophrenia Digest, Winter 2006
Many years ago, before I started making documentaries for a living, I knew there was one story I had to tell, a story I had no choice but to tell. It was happening in my own life, to my own mother, Millie Smiley. Her life seemed too strange and disturbing to be true.
The film that took six years to make, Out of the Shadow, was born in 1997 out of my anger about the stigma and vast code of silence surrounding people who have schizophrenia and their families.
In my family no one talked about my mother’s "odd" behavior, but we all wondered why she could not "pull her life together." The decades of repeated apartment evictions and involuntary hospitalizations kept my mother on a constant cycle of unfamiliar living arrangements, psychiatric wards, doctors, social workers, and medications. This film is about that, and also about the travesties of our public health system, which has so poorly cared for my mother that decades of her life were simply wasted.
My mother was a wonderful film subject---witty, engaging, and not self-conscious at all. She was supportive of my filming her before other family members, allowing me to capture her low points as well as her high points, and all the day-to-day struggles in between.
I think the film has turned out to be about many things: a family and the secrets they keep, the role of love and forgiveness, shame, and ultimately recovery and hope.
Since the film’s debut, I have been overwhelmed by heartfelt responses from people who have seen it, usually family members of those who have mental illnesses or health-care professionals. Their voices of familiarity tell me we are in this experience together. I am shown time and again, that my family is only one of millions of families wrestling with this illness. The decades of silence and shame that Millie, my family, and I had to endure are validated by a shared experience that is all too common.
Now, Millie’s story will offer hope and healing to millions. During Mental Health Month in May, Out of the Shadow will be broadcast on PBS television stations nationwide. As her life has inspired me, I hope that her story will inspire countless others.
Following are excerpts from Out of the Shadow, a 67-minute documentary film by Susan Smiley. You’ll meet Susan’s family---Susan, her mother Millie, sister Tina, and father Alan.
Voice-over (VO) narration/Susan:
We’ve all seen these people: destitute, delusional, muttering to themselves. For the most part, we just walk away and keep going. But every time I pass one of these people, I think: "That could be my mother."
Once again, it’s come to a crisis. It’s April 1999, and I’m back in Chicago to see our mother, Millie. She’s on a psych ward, and I’m worried sick. She’s served by the public health system, and because of laws concerning a patient’s confidentiality rights, no one tells us anything. We have no right to information about our own mother.
After years and years of this, I’m angry and fed up. My frustration with the system and confusion about Mom’s illness has fueled my need to tell this story.
Susan’s mother, Millie: There’s something wrong with me. I’ve been working it over and over at Elgin [an Illinois state psychiatric hospital]. I’m here … I’m in Elgin because I had - you know, I lost all my money. And then I didn’t even replace it. Whether I fit into that category that mentally ill people fit into or not … I’m bankrupt, and there’s something wrong with me.
One of the most confounding aspects of Mom’s illness is that she has no insight about it. No awareness that she has it. She doesn’t understand why over the past 20 years she’s been in and out of 17 psych wards, 8 apartments, 3 boarding houses, and countless motels. She has not been able to hold a job in 30 years. She’s alienated her family and lost touch with every friend she’s ever had.
Susan: Do you agree with this diagnosis of paranoid schizophrenia?
Millie: I know what paranoia is, yes, but schizophrenia, no. I could never get a grasp on that.
You know, I slit my throat and wrists. Blood everywhere. The noise pollution was awful. It was like 10 billion years of hell slamming through my head. The noise pollution temporarily set something off in my head. The circuitry. You know, you have circuits in your head that make the dense parts of your brain work for you, and it all. ... I think the circuitry missed a connection or something.
The police are mad at me to this day. The Illinois Police. Say they don’t want anything to do with "that bloodbath woman." I got mad at them for calling me a "bloodbath woman." I told them they should do something about their Creepsville problems. Try to clean up Illinois and make it a more livable state.
Susan’s father, Alan Smiley: When she gave birth, to our little Susan, Millie became terribly despondent and irrational. And then, I’d say about three weeks into coming home ... she tried to commit suicide. She cut her wrists.
I said, "My God, what am I dealing with here? This is an unusual circumstance. She’s not rational. I think she’s nuts." And I said, "What did I do?"
It was like she was in a deep tunnel. Her highs were high and her lows were terribly low. So, I got into this pit of despair. I didn’t want to be around her. How could a father leave children that are one and a half and three years old? How can a man leave like that? I had to, to survive.
Susan: Soon after his divorce, my father married my step-mom, Nancy, and they had three kids of their own. Their life seemed happy and relaxed. To Tina and me, it felt like an eternity between visits to their house, especially because life with Mom was really frightening. She was becoming more and more paranoid and erratic.
Susan’s sister, Tina: We always thought, as children, that we had cameras all over the house, little cameras. And people, the FBI or the CIA, were spying on us. Our teachers were spies.
She was also very abusive. Mom beat Susan horribly. That was my first memory of her, being terribly horrid to us. I didn’t think anybody around us cared. We’d go outside, and she’d beat us outside and not one neighbor came out to help us. And it bothers me to this day, because one of the neighbors, he was the police chief. The woman across the street was always in her garden.
On bad days my mother was violent. On good days she would sleep all day.
Why didn’t I tell Dad what she was like?: terror, plain and simple. I was afraid he wouldn’t believe me. I was afraid of betraying her and that she might literally kill me for telling him.
We knew our mother was a horrible human being sometimes, but she could be so loving, and it was just so confusing. And I think it kept other people believing everything was okay.
The three of us were isolated. Mom by her illness; Tina and I by our fear and humiliation. When I was 12, I finally mustered the courage to leave Mom and move in with Dad. Since Tina’s survival tactic had always been to ingratiate herself with Mom, I was sure when I left she’d be all right. I was wrong.
Tina: To live every day not knowing if I was going to wake up in the morning and be alive by the end of the day constantly, throughout my entire childhood. … I thought by killing myself, my mother would be happy.
Susan: After Tina’s suicide attempt, my father filed for custody of her and she was placed under the care of a psychiatrist who saw the odd daughter-mother relationship between Tina and Mom. Finally, we got a name for Mom’s behavior: schizophrenia. Mom was 36 and I just wanted to escape her. So, for many years I did.
But it was hard knowing that Mom was becoming more and more disabled. She became increasingly withdrawn and despondent. In 1983, she attempted suicide, for the second time. She then sold her house and lost all her money. Soon after, she was sucked into the public health system.
When Tina and I learned we could take on the system and have more knowledge and control over Mom’s care, we sought and gained guardianship of her. But now, I’m faced with a moral battle, a true crisis of my conscience: Can I be the parent to Millie that she has never been to me?
Susan: Everywhere Mom lands within the fractured system she gets a new doctor who has a different idea of how to treat her. This time, I was really shocked at the number of meds she was assigned.
Millie: This is an antidepressant. This is a major tranquilizer for psychosis. I don’t know what this is. It’s for restlessness and side effects. That’s for mood swings. This for sleeping. And this is for anxiousness. And they all have side effects, and they all interact not very well.
I just can’t understand how the state got a hold of me. I just can’t understand it. It’s kidnapping.
It’s April 2001, and Mom has been in the nursing home for a year when a space finally opens up in a group home—the Holy Grail of placements. The only hitch is, she has to pass a battery of interviews—assessing her mental health. We knew that this placement would be critical to Mom’s chance at some kind of rehabilitation. She knows how much is at stake, but I seriously questioned if she could pull it off.
When we were told Mom passed her health assessment, I was hugely relieved. For the first time in years, I felt a sense of promise for the possibilities ahead. Now she’s going to move into the group home. It’s her 47th home in 20 years.
This will be a stable and secure home, a permanent residence. No matter what happens, she can’t be evicted. She’ll finally have a chance to feel safe.
Susan: [December 2001] This is the best situation you’ve been in in a long time.
Millie: It is. I have a job. I love work. It’s normal people. The bus has normal people. Your family and friends are normal people. I can hardly stand it. It’s something to look forward to when I get up in the morning. And I want to have a savings account and be able to pay for my funeral. And leave you something when I go. I’m very enthusiastic about the food, too. It’s delicious, nourishing; it’s seductive; it’s gourmet fast food.
Susan: Mom’s holding down her first job in nearly 30 years. She’s a dishwasher at a sandwich shop. The group home administrator thinks the medications have really been working. Taking them twice a day is a group-home requirement. But she’s not making the connection that the meds are helping her. She’s not seeing the cause and effect.
She’ll probably always believe she’s a victim of the system and not the victim of an illness. The sad truth is, it’s both. Circumstances beyond her control have led her here and this may be the most she can achieve.
Tina: Anybody that’s dealt with a family member with schizophrenia knows that it’s not something that just goes away after they start taking medication. It’s something you have to deal with ’til the day you die.
I’ve spent my life trying to figure out why this is the mother I was given. Wanting answers, some justification for the pain and loss we’ve all been through. Along the way, I’ve gained great admiration for Millie and her resilient spirit. I don’t hide my past anymore, or Mom’s illness. And finally, I’ve found some peace in the fact that ultimately, for some things, there are no answers.
Millie: Anything I can do for you, let me know. I’m still your mother. I’m supposed to be the mother. I know you are, but I’m supposed to be.
Susan Smiley has been making documentaries since 1997. She has created films for Discovery Channel, History Channel, Sci Fi, MTV, and PBS. Her company, Vine Street Pictures, is based in Los Angeles.
Screenings are free and open to the public.
Please call to confirm.
Somerset, New Jersey
February 15, Wednesday – 1:00 p.m.
Doubletree Hotel & Executive Meeting Center
200 Atrium Drive • Somerset, NJ 08873
Host: Carrier Clinic • Info: (800) 933-3579
February 23, Sunday – 6:00 p.m.
Hazard Community and Technical College JCC Auditorium
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March 12, Sunday – 1:30 p.m.
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April 27, Sunday – 7:00 p.m.
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May 25, Thursday – 6:00 p.m.
Symphony Space – Thalia Theater Space
2537 Broadway • New York, NY 10025
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Info: (212) 799-3350
Out of the Shadow will be broadcast on PBS stations nationwide in May. Check your local listings for date and time.
Local community screenings are supported by NAMI (National Alliance on Mental Illness), National Mental Health Association (NMHA), and Janssen L.P.
To learn more, visit outoftheshadow.com
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