Alice’s Story
There is little study of what schizophrenics’ voices say to them, which would make people’s experiences more valid and meaningful and also lend itself to a more human account of mental illness. People’s experiences of hearing voices are often silenced, which can only augment ignorance and fear, both in society and in the mental healthcare system. To make matters worse, it is almost impossible to talk with other people and relate the pain that voices inflict when they are raging inside you and shouting you down.
ALICE IS IN HER EARLY THIRTIES. SHE CURRENTLY WORKS IN A LIBRARY, but her real passion is to become a mental health advocate and to help churches develop faithful understandings of mental health issues and, in so doing, become places of love and belonging. She is a passionate Christian but has always struggled to gain acceptance in the church. She admits that some of that is because she can be a bit difficult at times, but that is not the only reason. She has frequently been rejected by Christians not because of her behavior but because they have discovered that she lives with schizophrenia. Reactions to this description have often been profoundly troubling. Alice has lived with voices since she was twelve years old:
My earliest recollection of hearing voices would have been at age twelve. Where I was sitting out in the back garden and I heard a voice that was outside of myself, talking to me. It wasn’t very nice. In fact, it freaked me out! Growing up in the church that I had, my initial response was, “Well, this is obviously just demonic. I just need to pray more.” I assumed that it was wrong and that “obviously” it showed that I was going through some spiritual stuff. “We won’t tell mum and dad that then!” and you know, it was that whole kind of guilt associated with it, that this is “only spiritual,” I’m not going to talk about it, I’m not going to say anything.
Alice’s first response was to assume that her voice hearing had a spiritual root in the demonic. We will return to the demonic later in the book, but here we note how some Christians have a tendency to turn to the demonic to explain unusual experiences. That may be helpful if you live in Accra or Zambia, but it is less helpful if you live in downtown London. This negative spiritual interpretation initially caused a good deal of distress and isolation. Her family members were very religious, and the idea that her experience could be framed as demonic would have been deeply distressing for them. She couldn’t share her new experience with her family for fear of rejection and, perhaps, confirmation of her own deep, dark fear that what she was experiencing was in fact demonic. At first the voices were simply irritating: “The voices became more annoying than anything, because they wouldn’t shut up. Sometimes I just really wanted to sleep, and they just didn’t. And it was just this constant barrage of people talking and information and babies crying. I had this baby that would cry in the background—psychotherapists would love to look into that one; you know, my inner child is screaming for relief!—and all those kinds of things. When I got used to it, it was more frustrating than anything. At first it was quite scary and upsetting, but then it just became annoying.”
But as time moved on, the voices became more difficult, darker, more sinister, more dangerous: “I would see dark figures over my shoulder and the voices would shout at me, telling me I am useless and worthless and sometimes they would tell me to hurt myself. They didn’t tell me to hurt other people, but I have a few scars to remind me of what they told me to do to me.”
Tied in with the distress that came with the voices was the impact they had on Alice’s spiritual life, both internally and externally. Internally she struggled with the way her difficult experiences tempted her to discredit her own spiritual experience: “My life seemed like the surface of the sea in the storm, but God was the undercurrent that was peaceful. And so, I did have some kind of recognition of what it was that I was feeling. But … I mean even then … because everyone was telling me you’re nuts, you learn to not trust everything you feel. So even the peaceful, the happy or the joy, well that could be manic, that could be psychosis, that could be … it’s not real.” God was present as a potential source of joy and peace, something she recognized even in the midst of her wildest storms. However, because of the nature of her experiences, she, at least at points, felt that she couldn’t trust her own perceptions. Her assumptions about the nature of her “condition” discredited the feeling of the presence of God.
Externally, this feeling of spiritual uncertainty was amplified by the fact that her voice was often discredited in the public arena:
People assume that nothing you’re feeling or experiencing is real. “It’s just the schizophrenia talking!” When that happens, even the things that you want to be real you write off as, no, they can’t be. But when you are looking back, you go, “no, that actually was God! I wasn’t crazy!” (laughs) But nobody believes me. I mean if you [John Swinton] went into a church and said, “Oh, look, God’s been speaking to me about such and such,” people would go, “Oh, John, the big theologian and professor! (laughs), tell us more!” If I went into a church, even if I wasn’t going through my more difficult periods, and said, “Oh, God’s been speaking to me!” they’d be like, “Oh dear … here she goes. And what has God been saying to you, dearie?” So, yes, it’s not hard to write off people pretty quickly when it comes to God and everything else.
Alice’s spiritual fragility and vulnerability to being silenced as a knower are apparent. She is uncertain about her own spiritual experiences but aware that if she articulates them, she may well be discredited and her testimony reduced to a mere symptom.
And I felt God very strongly with me saying, you know, you’ve seen so much bad, let me show you the good. And since then I’ve had some incredible spiritual experiences where I have seen stuff, but there’s always been, it’s not just the dark figures on people’s shoulders anymore, there’s always the glory of God outshining that stuff, you know, like … it’s like I had been blind to that side of it. But it’s really hard to talk about this stuff and not sound like I’m still crazy, so I’m really careful about what I say and what I think. Because I don’t want people going, “That’s it, you’re still schizophrenic. Wrap you up and take you off to the loony bin.” Because it’s not like that at all anymore; it’s a very different experience now.
The third dimension relates to the spiritual meaning ascribed to her experiences by fellow Christians. “I had a lot of prayer from very well-intentioned people, about demonic stuff, and was told that I didn’t have enough faith, so I wasn’t being healed, all that kind of crap that you hear at churches. All the time, it makes me so angry! But it’s hard being told that you’re filled with evil, you know? Or that everything that you’re hearing and seeing is of the devil. Particularly as some of that stuff actually brings you peace. That’s really hard.” Alice loves Jesus. She sees some of her experiences as spiritually difficult but other aspects as beneficial. However, some of her closest friends, who should have been allies, opted for what they considered the “more obvious” description of her situation: the demonic. In so doing, they reinforced her own self-negativity and created a difficult and complex distance between Alice and God. “If I am truly filled with evil, then I can’t be with God.”
So, she finds herself in a rather painful situation: she loves Jesus, and her brothers and sisters who also love Jesus claim that she is filled with evil. What might it feel like for a brother or sister in Christ to be told that they are filled with evil and for it to be assumed that some of their most meaningful experiences are the work of the demonic? It’s pretty difficult to defend yourself when your testimony is so profoundly spiritually discredited. There is a strange parallel here between certain forms of the medical story that proclaim that voices are “only symptoms” and the theological story that proclaims that “it’s really demons!” Both narratives seem unwilling to listen to what it means for someone in Alice’s position to encounter voices that are deeply meaningful and perhaps even positive. People seem keen to explain the phenomenon but less interested in understanding it.
We heard Alice state that “some of that stuff actually brings you peace.” This is a curious statement. What could there be in her seemingly wild and confused experiences that brought her peace?
Before we address that question, we need to discuss one rather unusual aspect of Alice’s story. After many years of wrestling with schizophrenia, when she was in her early twenties, Alice’s voices and other accompanying unconventional mental health experiences left her. Why this happened is a mystery to her and to others, although a significant number of people diagnosed with schizophrenia do recover.2 Alice put the disappearance of her voices down to a group of elderly women in her church who gathered together regularly to pray for her, not, so they thought, that she be cured but simply to pray for her. Yet, from Alice’s perspective, the disappearance of her voices was the outcome of supernatural intervention. However, her psychologist told her that she had been misdiagnosed. The presumption seems to have been that if she had genuinely recovered, she couldn’t have had schizophrenia in the first place. Somewhere within these two descriptions of Alice’s situation lies the truth.
Putting to one side the exact nature of the causes, Alice’s voices and accompanying experiences were no longer a part of her life. One might assume that she would be delighted about this, and at one level she was. But she was ambivalent: “One of the big things I found really hard when I first was healed was that I was really lonely. It was suddenly really quiet, and I didn’t have anyone to talk to in the middle of the night. And so that was really hard. I went through this whole grieving process for things, for people that weren’t real. Which was really difficult, because who do you go to for that? ‘Hey, I’m really grieving over a friend that never actually existed.’ (laughs) Kind of hard.” How exactly does one articulate a feeling of loss and grief for people who never existed without people assuming that your grief is “obviously a symptom of your illness”? The removal of Alice’s voices led not simply to relief (although clearly that was an aspect for which she was thankful) but also to loneliness.3 For Alice, standard accounts of what it means for a treatment, or a healing, to “work” stood in tension with some important aspects of her experience.
I think that one of the things I found difficult was that [the psychiatrists] would be like, “your voices are bad, so we’re going to give you medication to get rid of the voices.” But [I would say] Yes! Sometimes the voices are terrible. But not all the voices are bad. Can we keep the nice ones? And so I understand why a lot of people don’t take their medication, because it’s actually sometimes a lot harder to be without your friends and to be with your enemies as well; it’s better to have them all than to have none. What they don’t take into account is that this is somebody’s narrative and these are characters in their narrative. And you can’t just … it’s like taking away their family, you know? It’s like you can’t do that and not have any repercussions of that. You can’t.
Alice makes an important point. For many people, the experience of voices is challenging, frightening, and undesirable, and they do consider medication a helpful way of coping with the suffering that comes from voices. However, as we discovered in our discussion of “the voice hearer,” there is another side to the experience of voice hearing. For some people, voice hearing is meaningful and relational. Voices are always characters in a narrative, a personal and communal story within which people try to make sense of their lives (for better or for worse) and to live well according to the experiences they encounter. Some of these relationships are clearly very difficult and require professional help, but not necessarily all of them. Failure to frame the issues within this narrative framework risks failing to look seriously at the relational nature of people’s voice-hearing experiences.
The importance of recognizing the narrative and relational dimensions of voices comes to sharp focus as we listen to Alice’s encounters with Anne. Anne was a consistently friendly and beneficent voice who stood by Alice in the midst of other voices that were the exact opposite. For Alice, Anne was very real and also very unreal at precisely the same time. Alice can live with this unusual tension, but when she tries to articulate it to others, problems arise: “I told someone once in a moment of weakness about my girlfriend Anne who would hang out with me in my sad moments, and they said, ‘Oh she’s a demon, Alice, you shouldn’t talk to her.’ And I’m like, ‘She’s the only person who sticks around long enough to see me cry.’ I’m like, where are you? If there were a real person there, maybe I wouldn’t need her, would I? So, what are you going to do? So yeah, it is really difficult when people say that kind of thing. It is hard.”
Alice’s friend may well have cared a lot for Alice. But when it came to her voices, things became complicated even if her intentions were positive. Anne, on the other hand, understood Alice’s situation. Alice’s “real life” friend struggled to understand her situation. Her confusion caused her to fall back on an explanatory framework with which she was familiar and that provided an explanation for Alice’s situation that seemed to comport with her belief structures. Her intention was to help. The outcome was not so helpful. Her description was intended to be spiritually discerning and pastorally therapeutic, but it had the result of demonizing (literally) an important source of Alice’s support. It’s not that Anne had to be “real.” As the sociologist William Isaac Thomas famously put it: “If men define situations as real, they are real in their consequences.”4 Ontology was really not the point. The point was the way in which Anne functioned within Alice’s social-support network: “Anne was an actual person to me, even though she wasn’t a person. And I knew she wasn’t real, I knew not to talk to her in public, but she was someone I could confide in and talk to. She was the person who was always there when I was upset. She was probably the biggest loss to me. She wasn’t there after that (her healing); I had to do it alone, I had to figure out how to do life alone. I mean, she wasn’t always the best influence, you know, but she was there. And that’s really hard to explain.”
Indeed, it is hard to explain. But difficulty in articulation does not invalidate the significance of Anne’s presence. When Anne was no longer available, Alice was left with a strange kind of loneliness. She knew that Anne was not real, but she also knew that she had been a meaningful presence. What looked like healing and release had side effects. Alice reflected on the implications of her situation for other people living under the description of schizophrenia: “I would meet people when I was in hospital, and a lot of them, in their sane moments, and you can always tell when someone is having a lucid moment, would talk about how lonely they were, and how much their medication just made them feel so isolated and lonely. And it’s like if you’re used to years of being surrounded, to take away that community is crazy; it’s crazy. It doesn’t actually address what that community was there for in the first place.” Discerning the underlying psychological reasons for someone feeling this way is the task of the mental health professionals. Understanding and responding to feelings of loneliness is a task for the church.
The problem with Alice’s loneliness was that once the voices left her, she had nothing to fill the gap. It is interesting to reflect on the tension between Alice’s loneliness and emptiness and the fullness of life she felt when she was in a psychiatric hospital. Some of her most meaningful times were when she was with people who saw the world differently.
When I was in hospital, I met some really interesting people. I met Jesus at one point; he’s a fifty-year-old moldy man from London. Being Jesus seems to be a common mental health issue; it’s really interesting. But, yeah, he was Jesus or an Old Testament prophet; [it] depended on the day. But I met a guy in his sixties who thought I was his mum. And I met a whole lot of interesting people. I met a lady who thought her face was falling off and all this kind of stuff. It’s so fascinating what people’s brains can do to them. It’s just … and I think for all of us, because we were all in it together, there’s a sense of community that is definitely I find I’ve missed, a lot. And we’re the nuttiest community out there, and we used to just sit around in a circle and smoke up a storm and swear and drink and whatever, but we understood there was no need to explain if you start talking to a corner. Everyone would just go, “Ah, she’s off her meds again!” No one would care! There was a real sense of family. And I haven’t found that again.
I wonder why Alice, a lover of Jesus, has not found such a community within the body of Jesus, the one who sits with and befriends tax collectors, sinners, and prostitutes; the one who touches lepers and sits with people who are assumed to be demon possessed. Jesus, the one who introduces himself to the Samaritan woman and “defiles himself” by drinking from her cup. Jesus, who draws to himself a rather bizarre group of followers whom he claims he will disciple into the ways of the kingdom. A ragtag group of followers who will transform the world and defeat the earthly powers that think they own the world but will soon discover that they do not. Jesus, who died and came back to life and now reigns in heaven.
True, Alice’s strange community has odd beliefs. True also that her voices are unconventional, although not perhaps as unconventional as we might have thought before we reflected on voice hearing. Nonetheless, one might expect that a community built on unconventional relationships and unusual beliefs might at a minimum empathize with her need for epistemological generosity, understanding, acceptance, and community. Sadly, it seems that this may not be the case. They always presume that the problem is her schizophrenia. It may be that at least some of her problems lie elsewhere.
Thus far we have suggested that rather than looking at schizophrenia as a single monolithic condition, it might be better to adopt a perspective that seeks to explore the various experiences that constitute the diagnosis as individual and deeply meaningful experiences that can bring great distress but do not inevitably do so. Our focus on voice hearing has helped make the point that the presence of voices is not necessarily the problem. Many people hear voices, and it makes little difference to their lives. The issue that concerns mental health professionals emerges from the distress these voices may cause them. It is the issue of distress that forms the realm of the mental health professionals’ remit.
However, we have seen that at least some of this distress is culturally bound, and some of it can actually be caused by the eradication of voices. This affects the meaning and impact that medication has for the personal experiences of individuals. If mental distress is the focus of professional mental health care, then we must understand the breadth of experience that those living under the (fragile) description of schizophrenia actually encounter. Alice’s story has begun to show us what that might look like. The alleviation of psychological distress is very important. We just need to be careful that we understand what that means.
In closing this chapter, we will draw together some central theological issues that can help us understand and care more deeply and faithfully.
One thing that has become clear is that the diagnosis of schizophrenia is culturally highly problematic. Regardless of the experiences that the diagnosis attempts to capture and respond to, there is something about the term that has become difficult for Westerners. That difficulty affects individuals in significant ways. Previously we explored the idea of the more positive identity of “voice hearer.” This has positive potential, but there is another way we might name people living under the description of schizophrenia, and that is friend. Before teasing out this suggestion, we need to think our way into what God calls human beings to do.
The Genesis account of creation is a tremendously powerful story that informs us of a creator God who brings the world into existence and promises to love it. The word of God brought the world into existence, and the love of God sustains and holds it in its place. God creates a whole wealth of beauty—animals, plants, seas, rivers, and mountains. In the first creation account, God gives human beings responsibility for the world by giving them dominion over it—a call to crush it down and hold it in its place: “Then God said, ‘Let us make mankind in our image, in our likeness, so that they may rule over the fish in the sea and the birds in the sky, over the livestock and all the wild animals, and over all the creatures that move along the ground’” (Gen. 1:26). Humans are to hold the world in its place. But in the second creation account, we get a slightly different story. God tells Adam to care for and tend the world: “The LORD God took the man and put him in the Garden of Eden to work it and take care of it” (Gen. 2:15). The world is wildly out of control, but our response to this should be caring and tender. That is a powerful metaphor for being alongside of people living with psychotic disorder. People may be wildly out of control, but our response must always be caring and tender. This is a creation principle, which is critical if we are to develop a kinder, gentler mode of mental health care.
A responsibility that sometimes gets overlooked comes in Genesis 2:19–20, where Adam is given another vital responsibility: to name things. “Now the LORD God had formed out of the ground all the wild animals and all the birds in the sky. He brought them to the man to see what he would name them; and whatever the man called each living creature, that was its name. So the man gave names to all the livestock, the birds in the sky and all the wild animals.”
Part of Adam’s responsibility to care and tend for the world was to name things faithfully and properly. Adam sat down, and as each creature came forward, he gave it a name. So the long-necked four-legged creature came forward, and Adam named it a giraffe. The long-toothed hairy-headed animal came forward, and Adam named it a lion. The smooth, thin, wriggly creature came forward, and Adam named it a worm. Once the creatures were named, that was what they became. There were no lions before Adam named them. There were long-toothed hairy-headed animals, but lions came into existence only when Adam gave them that name. They found their place within creation as they received their particular name. God gifted them their existence; Adam gave them their name.
That being so, a primal responsibility of human beings is to name things properly. The way we describe and name things is a matter of faithfulness. We have seen that stigma takes away one’s name and replaces it with a caricature or a stereotype based on a person’s diagnosis. The name “schizophrenia” has become an aspect of a pathological culture that makes living well with experiences often described as schizophrenia very difficult. Stigma in all its forms is deeply sinful. It is a distortion of human beings’ primal responsibility to name creation properly. As such, it needs to be countered at every level. In this chapter, we have argued that destigmatizing voices destigmatizes those who hear voices and allows us to see them and to name them in a quite different light. Taking seriously our vocation to name things means we monitor our language around diagnoses such as schizophrenia and refuse to allow that diagnosis to determine the person who bears it. There are no “schizophrenics” in the kingdom of God; just people who love Jesus.
A primary aspect of the church’s response to the pathogenic dimensions of culture is to give people back their names. Enabling the possibility of people having a name of which they can be proud is central to facilitating a future that makes hope possible. It is interesting to reflect on Jesus’s encounter with the Gerasene demoniac in the light of this suggestion. Jesus encounters a man who seems to be possessed by demons and who lives among the graveyards. He is violent toward himself and others. In Mark 5:9 Jesus does a rather unusual thing. He asks him what his name is: “My name is Legion,” he replies, “for we are many.” Putting to one side the issue of demons (which we will address later in this book), two things are important here. First, Jesus did not call the man possessed. He wanted to call him by his name. Second, the man did not reply by giving his name but rather named his condition. In this sense, he self-stigmatized, as opposed to Jesus, who refused to go with the man’s stigmatic persona. Here we see Jesus moving beyond “diagnosis” toward the person by seeking to name him differently than the way society and indeed the man himself had done up to then.
In John 15:15 Jesus once again draws our attention to the importance of naming: “I no longer call you servants, because a servant does not know his master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.” Here the disciples are given a whole new identity. No longer are they servants. Now they are friends of Jesus. Friendship is the nature of discipleship in God’s coming kingdom. Perhaps the most radical way we can counter the pathological culture we have encountered in this chapter is quite simple: make Christlike friendships with people. Sometimes the simplest things in life turn out to be the most profound.5
1. Benjamin Gray, “Hidden Demons: A Personal Account of Hearing Voices and the Alternative of the Hearing Voices Movement,” Schizophrenia Bulletin 34, no. 6 (2008): 1006–7.
2. Anne-Kari Torgalsbøen, Susie Fu, and Nikolai Czajkowski, “Resilience Trajectories to Full Recovery in First-Episode Schizophrenia,” European Psychiatry 52 (2018): 54–60
3. In relation to the administering of psychotropic medication, there would be logic in recognizing that while this may be necessary and helpful for some, it may also have side effects that are important but easily overlooked, this kind of loneliness being one.
4. W. I. Thomas and D. S. Thomas, The Child in America: Behavior Problems and Programs (New York: Knopf, 1928), 571–72.
5. For a further development of friendship in the context of schizophrenia, see John Swinton, Resurrecting the Person: Friendship and the Care of People with Mental Health Problems (Nashville: Abingdon, 2000).