The Shadow of Schizophrenia
My family never had much, and excess was not in my parents' lexicon. Dad was a pastor, serving small congregations, and Mom stayed at home. We were poor, but we didn't feel it much, surrounded as we were by farmers who lived by the whims of the rain we asked for at the weekly Wednesday night prayer meeting.
But each birthday was an occasion for a treat, and every gift was precious and heartfelt. On my fourth or fifth birthday, I unwrapped a stuffed animal that had been squeezed awkwardly into an ill-fitting cracker box and wrapped by my dad's bear-like hands. Before opening the bulging box, I could see fur sticking out of the corners. Inside was a koala, snuggly and a touch exotic.
I loved that stuffed animal. She inhabited an honored spot on my bed for the next decade. At some point, a seam popped and stuffing hemorrhaged from her neck. I pushed the fluff back inside and repaired the damage with painstaking but imperfect stitches that made her head a little crooked.
How could I have known she would one day become a prized possession and comfort to the woman who gave her to me?
Around the time I got that koala, Mom answered my questions about how I could follow Jesus and prayed with me when I first committed my life to him. She gently explained her own faith and assured me that God loved me.
Mom was faithful but also fragile, and I sensed her vulnerability; my whole family built systems to protect her. I loved and appreciated her, but something kept me from feeling close to her. I felt she was breakable—not a person of safety and strength, but someone who would falter before I would.
But I did feel safe enough, cocooned in a relatively predictable community where most people were a lot like me. That changed when my family moved to the city when I was 13. That year, my brother, the eldest, graduated and went to college. With Dad unemployed, we faced poverty and culture shock. My sisters and I began sharing a bedroom in the two-bedroom bottom floor of a two-story house converted into a duplex. I put off childish things and relegated my koala to a shelf in the closet.
Soon after, we began to see (without understanding) Mom's frightening response to tremendous stress. She zoned out, forgot important things, got confused, had more and more trouble processing and communicating, and didn't always seem "with us." She had trouble making even the simplest of decisions, sometimes forgot to make dinner, and seemed overwhelmed by driving. Her personal care, such as bathing and sleeping, suffered. She neglected matters she had always handled before.
Alarmed, my sisters and I talked to Dad, and he found a counselor for Mom to talk to. But no one, including the counselor, really understood what was happening or what Mom needed.
After track practice one day, I waited for a ride home and no one came. I called and a neighbor answered the phone—she told me Mom had gone to the hospital. I walked home and found my brother there. He had come home and found her unresponsive, unaware of reality, unmoving.
The next day at track practice, I found myself crying at the end of my run.
"What's wrong?" my coach asked.
"My mom is in the hospital," I said. When he asked why, I answered, "I don't know."
For a long time I was okay with not knowing why. I just knew that each time she came home from the hospital, I thought she was back for good. It took a few years to realize the back and forth was our new reality.
When she was back, she was on medications that helped her function but had powerful side effects and didn't restore the person we had known. We lived in a repeating cycle of hospitalization, medication, stabilization, and disintegration. We lived in the dark, navigating a mental-health care system that shut us out of the circle of care and communication. We didn't know Mom had schizophrenia. We didn't know she would always need treatment.
At some point in the exhausting cycle, that precious koala found its way from my collection of childhood treasures into my mother's arms. At night I tucked them in together. The matted fur and flattened features, misshapen by my love, symbolized how very needy my mother had become.
I never talked to a counselor in high school, and never discussed Mom's illness with an adult. I didn't know how to frame an experience I couldn't understand, and no one asked what was happening at home. Our church was full of well-meaning people who were mostly ignorant of our problems and, among those who knew, largely at a loss. I was a strong student, resourceful, socially competent, hardworking, and principled. I was absolutely determined not to be the kind of weak, vulnerable, flailing person I saw in my mother. Already an independent teenager, I embraced self-determination and moved toward the life I wanted. I looked out for my younger sister and looked to the outside world for my definitions of normal. When I left the house, I pushed away sadness and confusion and became another, lighthearted version of myself. I denied sadness and pain to the point that I stopped feeling them.
When I had the choice, I distanced myself from Mom. I didn't introduce her to my friends, and I rarely invited anyone to our house. My best friend's mom, who attended our church, commented that she had seen me sitting next to a quiet woman at church one week and realized that was my mom. Even though her daughter and I had been hanging out a lot for a few years, she had never met my mom—she didn't even know who my mom was. I was desperately ashamed of Mom's vulnerability and oddities and feared my association with her would paint me in the same colors.
But she was my mom after all, and distance wasn't always possible. One day when I was 15, she had a psychotic episode in the dentist's waiting room. Desperate to show others and myself my own competence, I drove Mom around to do errands with her. When she fumbled with her food stamps at the day-old bread store, I counted them out with a flourish and gave the cashier a look daring her to despise us.
My siblings and I were all expected to go to college, and I agonized in choosing a school, never thinking of involving my parents until Dad offered to help me decide. Ultimately, I chose a school that fit two main criteria: a sense of nonthreatening community, and a comfortable distance from home.
A Long Night
I thrived on both distance and community but didn't leave home as thoroughly as I had wanted. I began suspecting that my coping mechanism—denying negative emotions too overwhelming to face—had suppressed my capacity for positive emotions too. I had many friends, but my independence was a liability. I automatically built walls between us for my own safety.
Mom's ongoing illness still slashed at me. She sent me coloring-book pages in the mail and I never knew what to expect when I went home. I began to understand that what I wanted most was to feel small and weak, supported by someone stronger and wiser than me, who loved me despite the places where my fur was matted and I had been awkwardly mended. To trust someone whose own fur wasn't falling out.
I knew every Sunday school answer. If asked whom I could trust, I would have said, "God." But while I trusted him for my salvation, I didn't really trust him with me. I didn't doubt God was real and sovereign. I got that Jesus was my only hope for redemption. But I didn't see him as someone who loved me with personal affection, who would keep watch if I let my guard down, who would love me if I were bumbling or broken. After all, I had seen what happened to my parents, who claimed God loved them and who were better people than me. And if pressed to identify a villain in my family's story, I would have pointed to God. I wouldn't have known who else to blame, and I had enough faith to believe he could have prevented what happened to Mom.
One night, I lay in bed and watched the outside traffic send shadows across the walls. Something broke open, and a great grief erupted from my heart. I cried and sobbed and punched my pillow in rage. I told God I didn't know if he was real and wasn't sure he was good. I flung a challenge his way: "If you're there, show me."
It's impossible to describe the experience, but I received an immediate and unexpected response—a huge, nearly tangible presence and a nearly audible voice with a clear message: "Here I am." I was shocked into silence. I had encountered Someone much larger, more capable, and stronger than me, who had answered my challenge in a moment of great weakness, a moment I would not have shared with anyone else. He had left no doubt: He was real and was listening. I began to trust him, a little.
The encounter altered the angle of my life—a change in degrees, hard to see at first but with increasing impact as the years passed.
Emerging into Light
During my senior year of college, I married a good man who has a gift for granting safety to others. I trusted him enough to make him part of my family and to start a family with him despite my greatest fear: that I myself would become mentally ill. One of my sisters shared the same fear, so we granted some peace to one another by promising to intervene if we ever saw symptoms.
Adulthood gave the distance I needed to safely sort through my childhood experiences and loosen my grip on self-protection. I saw a counselor, the first person I ever told about the most painful realities of life in the shadow of schizophrenia. When I told her my mother slept with my old koala, she didn't retch in horror. She didn't belittle my pain or administer testing to gauge my own psychological disturbance. Instead, she said with tenderness, "You lost your mother." For some reason, I had never thought of it that way, and her words gave me a framework to understand the repeating cycle of loss and grief our family endured. They freed me from the sense that I hadn't done enough, that in my reluctance to repeatedly reattach myself to a mother who kept fading, I had somehow let her down.
Later, I saw another counselor, who helped me explore the idea that I had more to offer the world than competence. That part of my calling in this life is simply to be me, and that opening up does more than expose me to pain—it offers a gift God meant for me to share.
A third counselor helped me take another step, graciously walking through symptoms of serious and chronic mental illness to assure me I wasn't ill. She helped me embrace the truth about myself: I am weak, vulnerable, and fragile. These conditions aren't incompatible with normal life, as I had thought, but definitive to normalcy. They are realities I must accept if I'm also to accept God's unconditional love.
But growing emotional health didn't soothe my sorrow over Mom's ongoing struggle with schizophrenia. In fact, as I grew in courage to face my pain, my awareness of pain intensified.
I met friends' moms at weddings, baby showers, and birthday parties. I agonized over what to tell my children about their grandmother. I wondered whether to blame or pity Mom when her choices caused trouble for herself or others. And I waited with shallow breath for the next time her medication would fail or she would stop taking it.
Then one day, Mom left home without word. Her paranoia, when mismanaged by medications, led her to believe that she couldn't trust family members and that she was safer out of the house. For more than a month, we followed clues that led us far enough to guess she had found shelter, but privacy laws blocked our efforts to confirm where. I lay in bed at night, prayers mingling with images of terrible things happening to her. After some family friends spotted her at a homeless shelter where they were serving a holiday meal, my sister went to visit. Mom barely recognized her.
Eventually she came home and crawled back toward reality. Shopping with Dad, she stood in the aisle displaying picture frames, staring at smiling families. "What's family?" she asked him. She knew the word was significant but couldn't remember what it meant.
One day I was riding with some coworkers to an offsite meeting when my husband called to tell me Mom had been arrested. Through her trial, conviction, and prison time, all we could do was write letters substantiating her health history and begging for the treatment she needed—which she eventually received.
The day I saw Mom's bewildered face on the state's department of corrections website was among my saddest. But that was when God helped me finally understand that her experience was not mine, that I needn't be ashamed or afraid to be her daughter. The truth about her was no uglier than the truth about me.
A New Day
When I sought counsel from a pastor, I hoped he could address questions about Mom's spiritual condition and why God allows mental illness. Wide-eyed and stammering, he left my questions mostly unaddressed and showed that many church leaders' silence about mental illness indicates they aren't sure what to say. So again I challenged God to answer my questions himself.
A study of Isaiah transformed my view of God himself. He's a God who challenges us as well:
"Who has done such mighty deeds, summoning each new generation from the beginning of time? It is I, the Lord, the First and the Last. I alone am he." (Isa. 41:4, all from NLT)
This same God makes clear who carries the blame for our sorry and painful condition. He also proposes a magnanimous solution:
"Come now, let's settle this," says the Lord. "Though your sins are like scarlet, I will make them as white as snow. Though they are red like crimson, I will make them as white as wool." (1:18)
He promises to love us better than even a mother can: "'Can a mother forget her nursing child? Can she feel no love for the child she has borne? But even if that were possible, I would not forget you!'" (49:15).
And he has given us a dazzling vision of a time when we will live in the kind of world we were made for:
In that day the wolf and the lamb will live together; the leopard will lie down with the baby goat. The calf and the yearling will be safe with the lion, and a little child will lead them all. (11:6)
As I wrestled with a theology of suffering, tainted by my 21st-century Western assumption that I deserve a comfortable and happy life, I stopped asking God why and how he could let schizophrenia happen to my family. I knew the answer: We are pervasively flawed and deeply altered by our sinful condition. And faith-filled or not, there is no reason such a thing shouldn't happen in this life. No reason it shouldn't have happened to my family. And someday, when we are each remade as whole and unmarred people, I imagine creation's renewal will be sweeter for people who have suffered the way Mom has. After accepting the truth and tragedy of our collective condition, I started seeing hope and redemption in our experience.
Earlier this year, my parents celebrated their 50th anniversary. Mom lives at home with Dad, takes her medication, sees her psychiatrist, takes care of herself, and lives relatively well. Thanks in part to conversations spurred by my book, my family talks more openly about Mom's illness than we have before. Mom reads, travels a bit, sews clothes for her grandchildren, and remembers their birthdays. She calls me and sends e-mails. She laughs when I tease her, and she understands my jokes. In some ways, the woman I knew as a child has come back.
But the people we were aren't truly gone. When we talk on the phone, I still listen for clues that Mom is ailing. When I visit her, I'm still nervous about what I'll see. I feel protective of her, careful with myself, and profoundly sad for her suffering. I know we'll never relate as most mothers and daughters do.
But God is my mother to the motherless (Ps. 68:5), and he has proven himself much stronger than me and more than trustworthy. He is the strong hand I needed as a teenager—and he was there, even when I didn't recognize him. He covers the old scars on my heart, not with a patch but with something much stronger and softer that doesn't remove the reality of my sadness but somehow makes me richer for it.
The shame is gone. I'm not embarrassed of Mom's illness; I'm proud of the way she's living with it. Schizophrenia may still do more ugly work in this woman, but my eyes will stay open; I'm no longer afraid to be like her or to take the emotional risks inherent in loving her.
I don't know what happened to that old stuffed koala. I suspect that between hospitals, shelters, and other places Mom has lived, she was misplaced. But that's okay—the mom and daughter who loved her have both outgrown her. And like everyone who makes it as far as we have, we're both missing some fur and our stuffing is a little flat. But the journey has made us softer.
Amy Simpson is author of Troubled Minds: Mental Illness and the Church's Mission (InterVarsity Press). She also serves as editor of Christianity Today's Gifted for Leadership. You can find her at AmySimpsonOnline.com and on Twitter @aresimpson.