In celebration of the launch of my new book, Troubled Minds, I decided to post the article that started it all. This was published in Leadership Journal two years ago, and it was the first time I ever wrote about mental illness and my family’s experience. This project started a life-changing journey for me, and I hope it blesses you as you read it–as it blessed me as I wrote it.
Here’s Part 1 . . .
When I was 15 years old, my mother picked me up at school to take me to a dental appointment. Riding in the car, I could tell immediately that she wasn’t functioning normally–I recognized warning signs that she was headed for another “episode.” She drove nervously, as if struggling to be fully aware of her surroundings, or perhaps imagining surroundings that weren’t there. She was silent except when I forced conversation, and when she did speak, her speech was slow and seemed to require deliberation. Her interaction with me was indirect and stiff, as if she were not fully aware that I was there. She seemed to be fading, as if half of her had already shrunk into some unknown place and the other half was not sure whether to follow or to maintain her grip on the reality of her daughter and a trip to the dentist.
I remember thanking God that I could legally take over driving if I needed to, and asking Mom whether she had taken her medication that day. Her answer was not straightforward, but it was clear that whatever the reason, she was not fully medicated and stable. So with one part of my brain, I prayed for a safe trip to the dentist. With another part, I employed a technique used by many people who feel powerless in the face of an unnamed enemy: I soothed myself by acting as if nothing was wrong.
We did make our way safely to the dental office, and we sat down to wait. When my name was called, I left my mother in the waiting room and went back for my appointment, stepping out of my anxiety about her for the moment, as I usually did when I was away from her–part of my strategy for coping with a devastating stress I didn’t understand. After half an hour or so with the dentist, I returned to the waiting room and approached my mom, who didn’t look at me. “Mom, it’s time to go,” I said. “I’m finished.” I received no response of any kind. And suddenly I realized my instincts had been right and my earlier fear realized: something indeed was wrong with Mom–again. And it was up to me to help her. I touched her arm and gently tried to shake her back to awareness, with no results. She was rigidly catatonic, immovable, staring into space and clutching her purse in her lap with clenched hands–in a waiting room full of strangers.
After a couple of quiet attempts to rouse her, I began to attract attention. People sat and stared at me as I tried to get her to respond. If I could just get her to the car, I thought, I could take her home or to the hospital or wherever. I have to get her out of here. But when she wouldn’t move or even respond to me, I realized I wouldn’t be able to get her to the car; I would have to call my dad at work for help.
With everyone in the room continuing to stare, I walked over to the reception desk and asked the woman behind the counter–who was also staring–if I could use the phone. “No, there’s a pay phone around the corner.” When I explained that I needed to call my dad for help, I didn’t have change for the phone, and it would be a local call, she still refused and pointed to the pay phone. So I went back to my mom and wrestled with her rigid arms, pulling them aside enough to get into her purse and get the quarter I would need for the phone. I went back to the receptionist to ask if she could keep an eye on my mom while I went to use the pay phone, and she shrunk back in horror. “Is she dangerous?” she asked.
After assuring the receptionist that my motionless mother was not about to attack her, I called my dad and then returned to sit next to my mom and wait for him to arrive. The receptionist and the people in the waiting room took turns staring at my mom, glancing at me, and studying the floor. And not one person asked me–a completely rational 15-year-old kid–whether I needed help.
In my years since, I’ve often thought back to that incident as a reference point for attitudes toward the mentally ill and their families. The way people in that waiting room responded to my family’s public crisis is the way I’ve seen people in general–including in the church–tend to respond to serious mental illness. To them, my mother was to be feared and I was somehow “infected” by my association with her. The people around me felt helpless and fearful, and they did nothing to help.
Although I didn’t know it at the time of the incident in the dental office, my mother has schizophrenia, a chronic, seriously disruptive, and potentially devastating biologically and environmentally based mental illness. As often happens with schizophrenics, at that time she had not been faithfully taking her anti-psychotic drugs and had lost touch with reality. After I called my dad, he left work and came to help, while one of the dentists became aware of what was happening and did what she could to help get Mom to the car. Dad and I took her to the hospital for another of her psychiatric stays and re-stabilization on medication. And so continued our family’s journey with an illness that in many ways has defined us, and that has shocked us again and again with its ugliness as it has developed in stages over time.
When I was growing up, my mother struggled with her mental health and showed symptoms of schizophrenia that are much more obvious in hindsight. She functioned well enough that her illness was formally unacknowledged and undiagnosed until my dad left his position as pastor of a small church and our family moved from a rural area to a city. Dad was out of a job for months, working temp jobs while he looked for another pastoral position. The whole family struggled with the adjustments this transition required, and for my mother, the stress of this time brought on the full-blown psychosis of schizophrenia, with symptoms that were impossible to ignore and that compromised her functioning almost completely. Through the years that followed, she was hospitalized repeatedly, medicated heavily, and inconsistent in taking her medication. This started my family on a confusing, difficult, and grace-filled decades-long journey.
For families, mental illness always presents a crisis, although the degree of crisis varies widely. As with other illnesses, the sick person demands much of the family’s resources, with little left for those who are well. In cases of serious and chronic illness like schizophrenia, family members develop long-term coping mechanisms that help them but aren’t always healthy–“emergency measures” that aren’t meant for long-term use. For example, denial is a coping mechanism people use to protect themselves emotionally as they adjust to a new and difficult reality–as that adjustment happens, denial is no longer useful but harmful. Other people escape into a fantasy world that provides much-needed relief but over time diminishes their capacity to function in the real world.
Add to that the confusion many families experience when navigating the mental health system, which focuses on stabilization and medication of patients, is reluctant to “label” people with diagnoses, and often refuses to share any information with family members who are then left to guess at how to support their loved ones’ treatment and ongoing health. If the ill person is expected to manage his or her own care and is noncompliant with medications, the family learns to expect the chaotic unexpected with each new day. On top of all this, when these families turn on the TV, watch a movie, or engage in everyday conversation with “normal” people, they’re reminded that in our society, which treats the mentally ill as jokes, terrifying criminals, or sub-human, they ought to keep their family life a secret. For children of those with serious mental illness, life is built on a shifting foundation, which may leave them confused about who they are, emotionally starved, alienated from the “normal” world around them, ashamed, and at risk of their own problems with mental illness and substance abuse. In the book Growing Up with a Schizophrenic Mother, Margaret J. Brown and Doris Parker Roberts cite a survey in which more than 25 percent of people with schizophrenic mothers reported that they had had problems with alcohol, drugs, or both at some point. And research indicates that anyone with a mentally ill parent has an increased risk of developing mental illness. This increased risk is due in part to genetic factors and in part to the environment and parent-child relationship that develops under the influence of the parent’s illness. Children of people with schizophrenia have a 13 percent chance of developing schizophrenia themselves, while the risk for the general population is less than one percent.
In my family, we all developed our own ways of coping with my mother’s illness. I developed a way of emotionally and mentally compartmentalizing my home and elsewhere lives so that I could literally be one person at home and another everywhere else. When I wasn’t at home, I didn’t give much thought to my mother’s illness or our family’s troubles. And I didn’t talk about my family life with anyone–not even my best friend knew about my mother’s struggle. I remember hearing other teenage girls complain about fights with their moms and wishing I could fight with my mom because it seemed so normal and my mom would have to be strong to fight with me. So occasionally I made up a story about a fight with my mom, which never could have happened. When I was home, I tried desperately to help and “fix” my mother and to suppress my negative emotions, which I didn’t know how to handle. Unfortunately, this had the long-term effect of distancing me from all of my emotions–positive ones as well–which I have since had to painstakingly learn to embrace and which I continue to struggle to express.
As I mentioned, my dad was a pastor, having ministered to two congregations. He left the second church before Mom’s illness became fully psychotic; however, she did struggle with some symptoms throughout his pastoral ministry. This ongoing struggle with mental health meant that Dad sometimes had to spend more time at home, either to care for her or to help care for the rest of the family. As Dad explains it, “When I took responsibilities of pastoring a church, I wanted them to be aware that my first responsibility was to God, my second responsibility was to my family, and then my third responsibility was to the church.” At times his responsibility to his family created “tensions between the church and the family,” and members of the congregation were not always understanding about the impact on his ministry to the church.
After leaving the second church, Dad never did serve as a full-time pastor again. He did pulpit supply and served as an interim pastor for a time, but “there was a time when I felt like I could not do it anymore. My time, my energies were needed here at home. I felt the Lord had something more important for me to do.” So my family settled into membership in our local church as laypeople.
In general, my parents have felt supported as laypeople in the church because they have connected with a few people who have been tremendously encouraging and who have prayed for them and walked with them through ugly times. But most people, including pastors, have kept their distance from both Mom and Dad. In Dad’s experience, most people in the church have been “a little fearful to talk to me or didn’t know what to say, or just fearful of mental illness in general. And it was basically just a few people who were comfortable talking with me and I would feel kind of left out in relationships.”
As for my siblings and me, no one offered extra support or asked what we might need. It just never came up. My sisters and I were active in the youth group and other church activities; no one ever asked how we were doing or how things were at home. And since then, in the decades that have followed, I have heard a total of one sermon on depression–nothing else that even mentioned the reality of mental illness. Several years ago, as I was sorting through some of my own baggage and some theological questions related to my mom’s illness, I asked a pastor for help with these theological questions, and he was shocked when I brought them up. He was clearly curious about my story, but as he stared at me, wide-eyed and panic-stricken, I realized he was deeply troubled by my questions and completely unable to help. In fact, I felt as if he couldn’t get me out of his office quickly enough because I had caused him to face questions he had tried to avoid.
To be continued . . .
© 2013 Amy Simpson.