There are 2.4 million Americans with schizophrenia. Susan Smiley's mother, Millie, is one of them. Although she had mood swings as a teenager, it wasn't until Millie was a 22-year-old wife in Urbana, Ill., that she first manifested the delusions, paranoia and rage that are hallmarks of this complex brain disease. Her illness worsened after the births of Susan in 1963 and sister Tina three years later; shortly thereafter, Susan and Tina's father, Alan, moved out and divorced Millie. In Out of the Shadow, a 60-minute documentary to air on PBS stations nationwide starting Oct. 8, Susan, now 42, chronicles her childhood and, as adults, her and Tina's efforts to help Millie—who, in the course of her life, has lived in and out of 47 mental institutions, halfway houses and group homes. (In a new book, Saving Millie, Tina gives her own account.) Their story:
Susan: My mom attempted suicide three weeks after I was born. Not much about schizophrenia was known. My dad was 21, scared and didn't understand the situation, nor know where to turn. He left when I was 4; my sister was 1½. I think he will always carry guilt with him.
My strongest images from childhood are of my mother sleeping or screaming. I didn't know how to tell time, so I would show up at school hours late or early. When I'd get home, my mother would be under the covers, and my little sister would be playing in the living room, her diaper heavy, so I would change her. To feed her, I would rummage through our fridge.
Tina: There was no one to tell what happened at school. But, in bed, at least she wasn't going to become violent.
Susan: Once when I was 8 I asked for help with homework. The Partridge Family was on. She took my books, blindsided me in the head, and said, "Don't interrupt my show!" I went to school with bruises. I got daily beatings. With Tina it was different. She became Mom's best friend. We were in survival mode.
Tina: People must have heard. We'd leave our windows open—but no one came.
Millie: It was a lonely life—single with two small children. I was a terrible mother. I'm sure I hit my daughters. They tell me I did.
Susan: She would go on manic shopping trips, dragging me and Tina along. I'd find drawers of unopened cosmetics—bought with child support money my dad sent. Or at 11 p.m., she'd wake us and say, "Come on, let's go get ice cream."
Tina: One Christmas when I was 10, Susan went to my dad's. I was sick and stayed home. Millie was sleeping and forgot about Christmas. I looked under the tree. There were no Santa gifts. It was awful.
There were sporadic, happy times.
Susan: When she was lucid she was smart and funny. On the "highs" she had an infectious laugh. She was childlike in her playfulness. We lived for those moments.
Tina: She'd buy me joke books and laugh at my joke-telling. It made me happy to make her laugh.
More often, Millie's paranoia ruled.
Susan: If the telephone rang, she'd yell, "Don't pick up." If the postman knocked, it was, "Don't answer!" She said our teachers were spies for the CIA or FBI; that Johnny Carson told her she should run for president; that she was friends with Elizabeth Taylor.
Days at home were oppressive, so I did a lot of escapist things. I'd ride my bike to this empty lot with this huge weeping willow tree that had fallen in a storm. The branches felt protective. It became my imaginary house. I would bring bologna sandwiches and potato chips and imagine an ideal family.
At 12, Susan moved in with her father, his second wife and their three children, near Chicago. Tina stayed with Millie.
Susan: My stepmom cooked every night, made sure we had shoes that fit, kept a calendar with people's birthdays marked. To me, she was the ideal mother.
Tina: One day Millie said she wanted me out of her life, that I was the reason for her problems. She stormed out; her last words were, "I hate you." My sister had moved out. I felt my father didn't want me. I thought everyone would be better off if I was gone.
At 13, Tina took an overdose of her mother's medications and was hospitalized for six months. Afterward, she too moved in with her father and his new family. For 18 years, Millie drifted from place to place and again attempted suicide; in 1999, Susan and Tina won guardianship. In March 2005, Millie moved in with Tina, a homemaker, her husband Jeff Kotulski, an osteopath, and their three children, Charles, 17, Eddie, 15, and Breigha, 8. Now, stabilized on her meds, Millie is a loving grandmother to Tina's kids, and also Marzhan, 2, the baby daughter whom Susan adopted from Kazakhstan in 2005.
Susan: I hope my mom can have happiness in the simple joys of life—grandchildren, walks, her kitties.
Tina: Susan and I have very different personalities. It's sometimes very difficult. But we're healing.
Millie: Every mother wants her children to be happy and that she's been a part of that. With my grandchildren, I'm getting a second chance.
For more information on schizophrenia, go to WWW.NIMH.NIH.GOV OR WWW.NAMI.ORG. For more information about Smiley's film, go to www.outoftheshadow.com
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