When I left home for the first time in 1999 to go to university, I was brimming with hope and optimism. I'd done well in school, expectations for me were high, and I gleefully entered the campus life of lectures and parties. To all appearances, I was a feisty, energetic and capable person with everything to hope for and aspire to.
Beneath that veneer, however, I was deeply unhappy, insecure and frightened—frightened of other people, of the future, of failure, of falling short of the punishingly high expectations that I had placed on myself. And, possibly most of all, I was frightened of the emptiness that I felt was inside me. I was skilled at hiding all this, of course. This aura of invulnerability I had created was so complete that I had even deceived myself. There was no way anyone could have predicted the catastrophe that was about to unfold.
It started during my second semester. I was leaving a seminar, humming to myself, fumbling with my bag—just as I'd done a hundred times before. Suddenly, I heard a voice: “She is leaving the building.” It was a calm utterance, just an observation. I looked around. No one was nearby, but the voice had a clarity and decisiveness that made it clearly separate from myself. Shaken, I left my books on the stairs and hurried home. When I arrived, I heard it again: “She is opening the door.”
The Voice had arrived.
I didn't know at the time, but this was only the beginning of a horrific personal journey for me. I was eventually diagnosed with schizophrenia, which brought the full burden of societal disapproval on my shoulders, and initiated a downward spiral into despair and hopelessness. Eventually, with the help of a supportive doctor and friends and family, I did recover. But along the way, I learned a great deal about myself, about how mental distress is stigmatized and misunderstood in our society and in the medical profession and how the stigma can be an obstacle to recovery as challenging as the voices themselves.
My Life with the Voice
After its first appearance, the Voice would stay with me for a few days at a time and then disappear. Gradually it came back more frequently and remained longer, ultimately persisting for weeks at a time, narrating everything I did in the third person. “She is going to a lecture.” “She is going to the library.” It was neutral and impassive. After a while, it even began to feel strangely companionate and reassuring. I noticed, however, that once in a while its calm exterior slipped, and it would mirror whatever emotion I might have been experiencing at the time, but which I hadn't expressed. For example, if I was angry and tried to hide it—which I often did—then the Voice would sound frustrated. For the most part, though, it was neither sinister nor disturbing. It seemed to have something to show me about my own true emotions—particularly those that were remote and inaccessible.
After two months or so I confided in a friend about the Voice. This was my first mistake. Her reaction—suspiciousness and fear—was a powerful sign of how hearing voices in your head is taboo in our society. The notion that “normal” people don't hear voices, and the fact that I did, implied that something was seriously wrong. From this initial encounter onward, other people's attitudes toward the fact that I was hearing voices had the effect of conditioning me to adopt a hostile attitude toward what was essentially part of myself.
The fear and mistrust I was picking up from my friend had an immediate and deleterious effect on me. Suddenly, the Voice didn't seem quite so benign. When my friend insisted I immediately seek medical help, I duly complied. That was mistake number two.
I didn't tell the college doctor about the Voice right away. Instead I talked about what I thought my real problems were: anxiety, feelings of low self-worth, fears about the future. He seemed to be deeply bored by the whole thing. When I mentioned the Voice, however, he nearly dropped his pen, swung round in his chair and began to pepper me with questions. I had his attention now. And let's be clear: I craved this attention—desperate to have people take an interest in me, to try and help me.
I told the doctor all about my strange commentator. During my explanation, the Voice was silent. If it had spoken, it probably would have said: “She is digging her own grave.”
The college doctor referred me to a psychiatrist, who likewise took a grim view of the presence of the Voice. In effect, she interpreted everything I said through a lens of latent insanity. For example, during one appointment, which was running very late, I told the doctor that I had to go because “I'm reading the news at six.” Her notes, which made their way into my permanent medical record, include the observation: “Eleanor has delusions of being a television news broadcaster.” What she didn't know is that I was part of a student TV station that broadcast news bulletins around the campus. I really did have to read the news. But the doctor never bothered to explore this statement. She simply assumed I was mad.
At this point, events finally overtook me. A hospital admission—the first of many—followed. Next came a diagnosis of schizophrenia. Worst of all, I began to feel a toxic, tormenting sense of hopelessness, humiliation and desolation about myself and my prospects. Having been encouraged to see the Voice as a symptom, rather than an experience, my fear of it and resistance to it intensified. I began to take an aggressive stance toward what was basically part of my own mind. I was engaged in a kind of psychic civil war.
The more antagonistic I became toward the Voice, the more hostile it became in turn. Soon it wasn't just one voice, but many. And they began to grow progressively more menacing.
Helplessly and dejectedly, I began to retreat into this nightmarish inner world, in which the voices were destined to become both my persecutors and my only perceived companions. They told me, for example, that if I proved myself worthy of their help, they could change my life back to how it was. They set a series of increasingly bizarre tasks. These started off quite small—for example, “pull out three strands of hair.” But they gradually grew more demanding and extreme, culminating in commands to harm myself. One day I received a particularly dramatic instruction: “You see that tutor over there? You see that glass of water on his desk? You have to get it and throw it over him.” I actually did it. It did not endear me to him or to the rest of the college faculty.
In effect, a vicious cycle of fear, avoidance and mistrust had been established, a battle in which I felt powerless and incapable of establishing peace or reconciliation.
Two years after my initial conversation with the college doctor, the deterioration had been dramatic. By then I had developed a frenzied repertoire of terrifying voices, grotesque visions and bizarre delusions. In the interim, my diagnosis had become a brand, a kind of social stigmata, that marked me out as disturbed and different—and vulnerable. I became a target for vicious bullying by a group of peers that began with ostracism, verbal taunts and culminated with physical and sexual assault.
The life I'd expected to have seemed effectively over. “Eleanor,” my psychiatrist told me one day, “you'd be better off with cancer because cancer is easier to cure than schizophrenia.” I'd been diagnosed, drugged and discarded and was now so tormented by the voices that I informed my grieved and horrified parents of my intention to drill a hole in my head to “get them out.” Fortunately I was prevented, but it was a devastating sign of my desperation at the idea of being condemned to the life of a voice hearer.
As I look back on the wreckage and misery of those years, it seems to me now as if someone died in that place. And yet someone else was saved. A broken, haunted person began the journey, but the person who emerged was a survivor and would eventually grow into the person I was destined to be.
Many people have harmed me in my life, and I remember them all. But the memories grow pale and faint in comparison with those who have helped me. The fellow survivors, the fellow voice hearers, the comrades and collaborators. My mother, who never gave up on me, who knew that one day I would come back to her and who was willing to wait for me for as long as it took. The doctor who worked with me for only a brief time but who believed that recovery was not only possible but inevitable, and during a horrible period of relapse told my terrified family: “Don't give up hope. Eleanor can get through this. Sometimes, you know, it snows as late as May, but summer always comes eventually.”
Those good and generous people fought with me and for me and waited to welcome me back from that agonized, lonely place. And together they forged a blend of courage, creativity and an unwavering belief that my shattered self could become healed and whole. I used to say that these people saved me, but I now know that they did something even more important: they empowered me to save myself.
Crucially, they also helped me understand what I had always suspected: that the voices were a meaningful response to traumatic events, particularly childhood events, and as such were not my enemies but a source of insight into emotional problems that were solvable.
At first this was difficult to believe. The voices appeared powerful and intimidating. In this respect, a vital step was my realizing that the voices had meaning, but the meaning was often metaphorical rather than literal. For example, voices that threatened to attack my home were not to be taken as an objective danger but as an expression of my own feelings of insecurity and fear in the world.
This process of “decoding” the voices took a long time. Initially I could not interpret them in this constructive way. I remember sitting up all night on guard outside my parents' room to protect them from what I believed was a genuine threat that the voices had conveyed. Because I'd had such bad problems with self-injury, much of the cutlery had been hidden in the house. I improvised by arming myself with a plastic fork, ready to spring into action should anything happen. (“Don't mess with me, I've got a plastic fork.”) Later, I dispensed with plastic forks and instead tried to deconstruct the message behind the words. When the voices warned me, say, not to leave the house, I would thank them for drawing my attention to how unsafe I felt, but then I would reassure them and myself that we were safe and didn't need to feel frightened anymore.
I would set boundaries for the voices. I would try to interact with them in a way that was assertive yet respectful, establishing a slow process of communication and collaboration in which we could learn to work together. Ultimately I learned that each voice was closely related to aspects of myself and that each of them carried overwhelming emotions that I had never had an opportunity to process and resolve—memories of sexual trauma and abuse, of shame, anger, loss and low self-worth. The voices took the place of this pain and gave words to it.
Possibly one of my greatest revelations was that the most negative, aggressive voices actually represented the parts of me that had been hurt the most. Correspondingly, it was these voices that needed to be shown the greatest compassion and care. By vilifying and rejecting them, I'd prolonged my suffering. My voices were actually the solution, an inextricable part of the healing process that drew attention to emotional conflicts that I needed to deal with. Armed with this knowledge, I began to gather together the pieces of my shattered self, each fragment represented by a different voice. Gradually I withdrew from my medication. And in time, I returned to psychiatry—not as a patient but as a student. Ten years after the Voice first came, I finally earned my psychology degree, with high honors. A year later I was awarded a master's degree, also with the highest ever grade score, and I am currently in the final year of my Ph.D.
Not bad for a mad woman.
As I emerged from this difficult journey, the voices never stopped. But my relationship with them changed beyond recognition. As I learned to accept them, they grew less hostile, more benign. Sometimes they were even helpful. During one of my exams, one of my voices dictated the answers. (Does this count as cheating?)
To be honest, I sometimes have enjoyed their attention as well. As Oscar Wilde said, the only thing worse than being talked about is not being talked about. The voices have also honed my skills in listening to two conversations at once, which comes in handy for eavesdropping. So it's not all bad.
Lessons in the Voices
What has become clear to me as a student of psychology is that my personal story is supported by a growing scholarly literature about the experiences considered indicative of schizophrenia. There is evidence that a proportion of the 1.5 million people who are diagnosed each year with schizophrenia are not victims of chemical imbalance or genetic mutation. Rather they are exhibiting a complex response to abuse, loss, neglect or other past trauma. That was the case for me. To the extent that the mental health profession acknowledges as much, it will more effectively help these patients in their recovery.
My own working life now fuses the personal and the professional to promote these ideas. For the past few years I have been working in mental health services, speaking at conferences, publishing book chapters and academic articles and arguing the relevance of the following concept: that an important question in psychiatry shouldn't be “what's wrong with you?” but rather “what's happened to you?”
And all the while, I have listened to my voices, with whom I have at last learned to live with peace and respect—and which in turn reflect my growing sense of compassion, acceptance and respect toward myself. One of the most moving and extraordinary moments in my recovery came when I was supporting another young woman who was being terrorized by her voices. Helping her made me become fully aware for the first time that I was no longer in that position myself but that I was finally able to help someone else who was.
I am now very proud to be a part of Intervoice (www.intervoiceonline.org), the organizational body of the international Hearing Voices Movement, an initiative inspired by the work of Marius Romme and Sandra Escher. They view voice hearing not as an aberrant symptom of schizophrenia to be endured but as a complex, significant and meaningful experience to be explored. Hearing voices is a survival strategy—an individual's sane reaction to insane circumstances.
Together we have begun to envisage a society that understands and respects voice hearing, supports the needs of those who hear voices and values them as full citizens. This type of society is not only possible, it is already on its way.
For me, the achievements of the Hearing Voices Movement are a reminder that empathy, fellowship, justice and respect are more than just words, they are convictions and beliefs. And that beliefs can change the world. As labor activist Cesar Chavez said, “Once social change begins, it cannot be reversed…. You cannot humiliate the person who feels pride. You cannot oppress the people who are not afraid anymore.”
In the past 20 years the movement has established Hearing Voices networks in 26 countries across five continents, working together to promote empowerment, dignity and solidarity for individuals in mental distress. We are working to fashion a new language and practice of hope, based on an unshakable belief in the power and resilience of the individual. For members of society, there is no greater honor and privilege than facilitating that healing process for someone—to bear witness, to reach out a hand, to share the burden of someone's suffering and to hold the hope for their recovery. Likewise, it is important for survivors of adversity to remember that we don't have to live our lives forever defined by the damaging things that have happened to us. We are unique, we are irreplaceable. What lies within us can never be truly colonized, contorted or taken away. The light never goes out.
As a wonderful doctor once said to me: “Don't tell me what other people have told you about yourself … tell me about you.”