Loving the 26 Percent
When Amy Simpson was 14 years old, there was a day when her dad didn't pick her up from track practice. When she finally called home, her neighbor answered, only to tell her that her mom had had "a stroke or something."
The truth is, Amy's mom was having a psychotic break—the first, but not the last break she'd experience. After being silent for years and years, the editor of Leadership Journal's Gifted for Leadership has finally started writing about growing up with a mom with schizophrenia—specifically in light of how the church did (and mostly, didn't) respond. Now she's leading the way to bring change.
Tell us about your book.
It's called Troubled Minds; Mental Illness and the Church's Mission. In it, I tell my family's story, and then I tell the story of other people who've dealt with mental illnesses, either with themselves or with their families. It's about what we've all experienced, in an effort to better help church members and leaders understand the kinds of problems and needs mental illness creates for people, and give direction on how they can help. It calls the church to see this demographic as a critical part of their mission.
What is your experience with mental illness?
My mother has schizophrenia. She started showing signs of schizophrenia as a young adult but she functioned pretty well when I was young, until I was 14. At that age, my family went through a period of tremendous stress. We moved from a rural area to living in the city, my dad was unemployed for a long time, and when he did get a job, it was either temporary or very low-paying. My oldest sibling, my brother, went from high school to college and my parents were left with three teenage girls who all shared a bedroom. My parents' marriage was really strained, and financially we were living in poverty, getting by on government assistance.
So my mom, who was already a fragile person, was suddenly forced to deal with all of this stress, which brought out her symptoms in a much more intense way. We saw it coming for about a year leading up to it, but the way the mental health system is set up, it's very hard to get help until it's already threatening the person's well-being.
When I was 14, one day my brother came home in the middle of the day and found my mom incapacitated by a psychotic break, completely unaware of reality. He and my dad took her to the hospital. I was at track practice, and my dad was supposed to pick me up after practice, but he didn't show up that day. I found a payphone and called my house, but a neighbor answered. She told me, "Something happened to your mom. I think it was a stroke or something. She's in the hospital, so you're going to have to find a way home."
I had a two mile walk back to my house, and it gave me a lot of time to think and worry. All that went through my head was, Did she die? Did I lose her? Is she ever going to be the same?
I did lose her, but in a completely different way. One of the great difficulties of mental illness, especially a serious and chronic illness, like schizophrenia or bipolar, is that you lose that person over and over again. And you grieve that loss over and over again. That's been my family's experience, repeatedly, since I was 14. We've lost her to hospital visits, and we've lost her to psychotic breaks, some of them private, some of them public.
The nature of schizophrenia for a lot of people is that it's cyclical. My mom will go through cycles where she's on an upswing and then she'll go back down. A lot has to do with the illness; a lot has to do with medication.
For a long time, my mom didn't fully understand her illness. The rest of our family didn't get her official diagnosis for almost 20 years. We had to come to that conclusion on our own. That's not a good way to help someone understand their situation. Often, doctors don't want to reinforce the stigma of a mental illness by giving it a name, and there are also privacy laws that say you can't tell someone's family.
The way to deal with that is to have a mentally ill person sign a consent form and put it on the file, but when someone is being hospitalized for a psychotic break, they're not in the position to do that. When someone is lost in a cloud of delusion and paranoia, like my mom was, she isn't going to sign a form giving anyone anything. Specifically not the people she's the most paranoid of.
My mom needs psychiatric medicine all the time. It's like a vitamin. But the medications don't always work long-term, and then she's hospitalized and put on a different medication. Right now she's doing really well. She has come to a better understanding of her illness. She's stabilized, more than she has been for a long time.
What were your experiences in the church?
My family was suffering tremendously, and we were heavily involved laypeople. But I never had a conversation with anyone associated with the church about what was going on in my family. Ever.
There were a couple of times when people brought over meals, like when my mom was first hospitalized, and they gave us some financial support once, but it was never ongoing support. This is very typical of churches. Wonderful, well-intentioned people were trying to do their best with what they had, but they didn't know what to do.
The biggest killer for me was silence.
Because the church never talked to me about it, nobody ever asked how they could help, nobody really had conversations with my dad, and I never heard sermons talking about this, it reinforced the idea that this is something to be ashamed of. It said to me, "You're the only people who are dealing with this, and we don't want to hear about it." I felt so alone.
I had no idea until the last few years how common my experience was. About 26.2 percent of American adults in any given year suffer from a diagnosable mental illness. Six percent are serious and chronic illnesses, like what my mom suffers from, and includes other conditions like bipolar disorder. The spectrum also includes diagnoses like depression, eating disorders, and Asperger's. There's a whole range of psychiatric illness. Growing up, I really thought we were the only people dealing with this. And other people I've talked to felt the same way.
When you don't talk about something, you don't normalize it. Church was the place that could have done that for me. As a matter of fact, it would have been the most powerful setting, because it would have helped me make sense of it theologically, and that would have been tremendous for my faith. I would have loved being able to deal with all of this and learn about it in the context of Christ's love and care for people. That would have made a huge difference.
When the church is silent on an issue where people are suffering, it comes across as silence from God. It comes across as, "The Christian faith, and actually, God himself, has nothing to say about this. This is outside the realm of what God can do or what our faith can handle or care about."
How did your article in Leadership Journal come about?
In the time that I've worked here, we've been through some very serious, dark stuff with my mom. She completely walked away from the church and her faith, she was not properly medicated. She believed she was receiving special insights in the church to leave the church and become involved with the occult. She left home, she disappeared, and we weren't able to find her for months. She was living in homeless shelters. And the way the system works, you can't just call homeless shelters and say you're looking for your mother. They can't tell you if she's there or not. It didn't help that my mom was so psychotic that she believed we were against her.
I was 500 miles away, but my sister and I worked to track her down. Finally, some friends of extended family happened to visit the city where she lived and served food in a homeless shelter. They saw my mom there. This information made its way back to my family. My sister was able to go to the shelter, and over the course of several weeks and months, reconnect with my mom. When my sister first got there, my mom didn't even know who she was. She was that far out of touch. After some time in the hospital, we were able to get her back home.
However, during the time when my mom was missing, she'd been accused of a crime.
After she came home, that accusation caught up with her. She was arrested, tried, convicted, and sentenced. She was incarcerated and spent time in state prison. That was a huge matter for grief for my family, but she got the care she needed there. She truly became mentally stable. Her time there is part of why she's doing so well now.
I'd been going through all of that stuff for a few years, really the whole time I'd worked here. But losing my mother to the occult, and then to prison—that was like going from one new low to the next. And as far as we knew, that was going to be it. We thought we were going to lose her.
My mother is the person who led me to Christ when I was 4 years old. We'd grown up with her example of faith. Now she was here, on a totally different path. We were pretty sure it was because of her illness, but still, where is that line? And then again with criminal behavior, where's the line? What does it mean for me that my mother is now a convicted felon? And she has this criminal record. Is it fair? She was psychotic.
I was processing through all of this again, trying to figure things out, and I spent a lot of time talking with my sister. Eventually, I looked up my mom on the prison website. Seeing her in the system brought to the forefront the question of, "What does this mean for me?" I'd felt such a personal shame for so long. And this was the point when I realized, That's not me. That image isn't me. It's someone who's had an extremely powerful role in my life, but that woman is not me.
You see, in everything that happens, there's this fear that that will be me, and that I'll go down the same path, at least biologically. When I think about that, it's terrifying. I've spent a lot of my adult life trying to prove that that's not me.
But looking at her photo in that moment, I finally separated myself from her as far as my identity. That was a big point of progress for me.
My mother came back to Christ while she was in prison. She came home, eventually, and my parents' relationship healed tremendously. All this healing happened for her, and it happened for me too. I don't know why, but God brought me to a place where I felt stronger in all of it than I had before.
I started feeling like God wanted me to do something with this experience. I'd started touching base with other people who seemed to have something like this in their lives. I felt this movement in me. It was the Holy Spirit's work in me, teaching me that it was not okay that I experienced all of this, but there was goodness in the experience.
I was talking to Marshall Shelley one day and the idea of writing about it was nagging at me. I'd been ignoring it because the thought of writing on this topic was terrifying. I didn't think I could be coherent, emotionally. But it kept bucking at me. My husband kept bringing it up, too. So I was talking to Marshall and I just said, "If you ever need anybody to write on the topic of mental illness, I'd be interested in doing that." And as I said that I was thinking, Is that true? Do I really want to do that?
Right away Marshall was really interested. He asked me what my background was and why I was interested in writing about it. We started planning an article right there.
I was terrified to write that article, but I got a lot of great feedback. It really resonated with people.
How'd you get from writing an article to writing a book?
After seeing response to the article, I did start to think that maybe there was a book in there. Marshall encouraged me to pursue it, too. I didn't even write any sample chapters, I just put together a book proposal, and more than one publisher sent me contracts for it. I chose IVP because they were very enthusiastic about the idea right from the start and it seemed like the right fit.
While doing the research for the book, what was it like to have conversations with people who've had similar experiences with mental illness in the church?
It made me sad and angry, but it was tremendously healing. This whole experience has shaped me. Some of what I went through was so traumatic that I never talked to anybody about it, like watching my mom go through a psychotic episode. So sitting down and talking to someone else who'd experienced the same things, or who'd suffered from something completely different but who've had similar experiences in the church and the same theological questions—that was really powerful. And it was healing.
For a long time, I never would have sat down and talked to you about this. I couldn't make enough sense of it, but mostly, I was really filled with shame. I felt like my mom's illness marked me. God first brought me to a place where I could get past that, and then he helped me understand that though it does mark me, it doesn't define me or mean there's something wrong with me.
When I started talking about it and writing about it, other people started sharing their stories with me. On a personal level, that took me to a whole new level of healing and being able to make sense of the experience. I started to see that this was something God was actually going to use.
Being able to glimpse God's redemption was hard to describe, but it actually brought me to a place of joy that I didn't think was possible.
And sharing that with my family has been really cool. My family developed some patterns and ways of dealing with this that mostly centered around not talking about it. My siblings and I are really close, but it's taken us years to start talking about these experiences. We were so set on protecting each other that we tried our best not to talk about what was happening. But my experience of writing this book meant I interviewed my siblings and my parents, and I asked my parents' blessing before I started writing it. We've had some really important conversations.
One pastor who read the book early on told me that reading this book changed the way she dealt with a situation at her church. She was able to help someone with a mental illness that she didn't think she'd be able to help. And that's the whole point.
Do you think through writing this, especially considering what your mom has gone through, that there's a connection between spiritual warfare and mental illness? Do you think that's somewhere Satan jumps in?
Well, I think that it's horrible that for many people, when they first start talking about mental illness, their first thought is that it's the demonic. This discourages people from acknowledging their problem, and it can cross the line into spiritual abuse.
That being said, our minds, bodies, spirits are interconnected in ways we can't even understand. And the connections are strongly in our own minds. Referring to an illness as "mental" is a false distinction. A mental illness is in fact a physical, biological illness. Schizophrenia is in your brain chemistry. But because we haven't always had this understanding of the brain, we still have some leftover notions of mental illness. There's still so much to be learned. So we tend to set mental illnesses apart in ways that aren't fair.
But at the same time, I do think a mental illness can affect a person spiritually in a way that other illnesses can't, because it's so closely connected to emotions and perceptions. And if it's causing delusions or hallucinations, often those are spiritual in nature. I don't think that means that it's a result of spiritual activity—I think it's more that it tends to affect people's perceptions of spirituality. But if Satan uses spiritual warfare to capitalize on our weaknesses, why not capitalize on something that compromises a person's ability to understand reality itself? Or a person's ability to emotionally process what's happening around them? It puts people in a vulnerable place.
It allows other people to capitalize on that vulnerability as well. When my mom was in the occult she had people firing her beliefs and manipulating her thoughts.
That just cements how important it is for the church to be actively loving the mentally ill.
If a person in your church is hospitalized, they'll be getting their psychiatric needs met, but not their spiritual needs. Or they'll experience spiritually-based practices that are very confusing. One time, a woman came to the mental hospital where my mom was staying and lead a group in spiritual "chanting."
But the church needs to meet those spiritual needs. They need to speak to the illness, and not be afraid to answer questions like, "How does their illness make sense in light of Christian theology?" For many people in popular American Christianity, there are underlying culturally-based beliefs about safety and prosperity. People think that unless God's really mad at you and is inflicting something against you¸ you should be healthy and happy and safe.
We don't have an understanding of what our natural state really is—it's really not so weird for us to suffer. Maybe what's weird is for us to be happy despite of all of the suffering. But we don't think of it that way.
That kind of disruption of someone's expectations verses their realities is a prime opportunity for spiritual confusion.
What's your hope for the church?
I want to inspire the church to change.
One of the things I did for my book was profile church programs that specialize in mental illness. So many churches I talked to said, "Well, we have recovery programs. Or a church nearby has a program for children will disabilities." There's a fundamental misunderstanding of what people with mental illness need, so it communicates that there's no place for people with mental illness in the church. I would love to see programs that support these people and their families.
I'd also love to see churches do the same kinds of things for the mentally ill that they'd do for those who have to have surgery, or a physical illness. I'd love to see them treat families with mental illness the same way that they treat those people. Right now, these people are neglected. People throw up their hands and say, "What can I do?" They don't think they're qualified.
The thing is, you're also not qualified to do a heart transplant. Yet somehow you don't feel paralyzed when ministering to someone who's just had one. We're not afraid to visit someone in the hospital recovering from surgery. We are afraid of visiting the mental hospital. When someone's had surgery, we give their kids rides to school and activities so they can have a normal life. We ask them how they're doing. We need to get to the point where we aren't afraid to do that with the families of the mentally ill, or the individuals afflicted. It might really shock someone at first, but it would be great if we could get to a point where it's not.
The financial burden, the work disruptions, the loss of jobs, the cost of medications—these are things the church need to understand. Often church leaders ask, "Why doesn't this person just stay on their meds?"
Well, sometimes it's comes down to choosing to pay for your medication, and choosing to eat that month. If churches could assist families financially, it would be huge.
You know, though, for some churches, it's just seeing people differently. It's realizing that this initial response I had to this person was based on my own fear, and not on my understanding of this person as a creation of God, valuable to God and intentionally placed here. Just because someone has a mental illness doesn't mean that they don't have something to contribute or that they can't use their spiritual gifts to serve the church. We marginalize them. It's not fair, it's not based in truth, and it's not biblical. I'd love to see more churches and individuals cross that barrier in their minds.
Do you think that there is a way for families in churches to start to feel more comfortable coming forward? I'm assuming many pastors and leaders have no idea that this is happening in their churches.
That's one of the struggles for church leaders. People stay silent, or they live in denial, because of that stigma. That's a problem. It would make a real difference if people who are dealing with mental illness, or the mental illness of a loved one, became more open about their struggles and what their needs are. But that takes a lot of courage. People don't always know how to describe their crisis.
And you know, it may start with people like me. People who have been affected by mental illness, but aren't in a place of acute crisis. I don't have the same kind of fragile existence as my mom does. I'd never want her to expose herself to emotional strain or feedback from some people. But coming through this experience, I can speak up now.
Amy Simpson is editor of Gifted for Leadership. She also works as a freelance writer and a regular contributor for CT's women's site, Her.meneutics. Her book is Troubled Minds: Mental Illness and the Church's Mission (InterVarsity Press).
Ashley Moore serves as Assistant Editor for the Church Law and Tax Group at Christianity Today. She assists with the creation of eBooks, and provides editorial support for ChurchLawAndTax.com. She also blogs on faith and life at Today's Christian Woman and ashleygracemoore.blogspot.com.