Eleanor Longden: The voices in my head

The day I left home for the first time to go to university was a bright day brimming with hope and optimism. I'd done well at school. Expectations for me were high, and I gleefully entered the student life of lectures, parties and traffic cone theft. Now appearances, of course, can be deceptive, and to an extent, this feisty, energetic persona of lecture-going and traffic cone stealing was a veneer, albeit a very well-crafted and convincing one. Underneath, I was actually deeply unhappy, insecure and fundamentally frightened -- frightened of other people, of the future, of failure and of the emptiness that I felt was within me. But I was skilled at hiding it, and from the outside appeared to be someone with everything to hope for and aspire to. This fantasy of invulnerability was so complete that I even deceived myself, and as the first semester ended and the second began, there was no way that anyone could have predicted what was just about to happen. I was leaving a seminar when it started, humming to myself, fumbling with my bag just as I'd done a hundred times before, when suddenly I heard a voice calmly observe, "She is leaving the room." I looked around, and there was no one there, but the clarity and decisiveness of the comment was unmistakable. Shaken, I left my books on the stairs and hurried home, and there it was again. "She is opening the door." This was the beginning. The voice had arrived. And the voice persisted, days and then weeks of it, on and on, narrating everything I did in the third person. "She is going to the library." "She is going to a lecture." It was neutral, impassive and even, after a while, strangely companionate and reassuring, although I did notice that its calm exterior sometimes slipped and that it occasionally mirrored my own unexpressed emotion. So, for example, if I was angry and had to hide it, which I often did, being very adept at concealing how I really felt, then the voice would sound frustrated. Otherwise, it was neither sinister nor disturbing, although even at that point it was clear that it had something to communicate to me about my emotions, particularly emotions which were remote and inaccessible. Now it was then that I made a fatal mistake, in that I told a friend about the voice, and she was horrified. A subtle conditioning process had begun, the implication that normal people don't hear voices and the fact that I did meant that something was very seriously wrong. Such fear and mistrust was infectious. Suddenly the voice didn't seem quite so benign anymore, and when she insisted that I seek medical attention, I duly complied, and which proved to be mistake number two. I spent some time telling the college G.P. about what I perceived to be the real problem: anxiety, low self-worth, fears about the future, and was met with bored indifference until I mentioned the voice, upon which he dropped his pen, swung round and began to question me with a show of real interest. And to be fair, I was desperate for interest and help, and I began to tell him about my strange commentator. And I always wish, at this point, the voice had said, "She is digging her own grave." I was referred to a psychiatrist, who likewise took a grim view of the voice's presence, subsequently interpreting everything I said through a lens of latent insanity. For example, I was part of a student TV station that broadcast news bulletins around the campus, and during an appointment which was running very late, I said, "I'm sorry, doctor, I've got to go. I'm reading the news at six." Now it's down on my medical records that Eleanor has delusions that she's a television news broadcaster. It was at this point that events began to rapidly overtake me. A hospital admission followed, the first of many, a diagnosis of schizophrenia came next, and then, worst of all, a toxic, tormenting sense of hopelessness, humiliation and despair about myself and my prospects. But having been encouraged to see the voice not as an experience but as a symptom, my fear and resistance towards it intensified. Now essentially, this represented taking an aggressive stance towards my own mind, a kind of psychic civil war, and in turn this caused the number of voices to increase and grow progressively hostile and menacing. Helplessly and hopelessly, 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, then they could change my life back to how it had been, and a series of increasingly bizarre tasks was set, a kind of labor of Hercules. It started off quite small, for example, pull out three strands of hair, but gradually it grew more extreme, culminating in commands to harm myself, and a particularly dramatic instruction: "You see that tutor over there? You see that glass of water? Well, you have to go over and pour it over him in front of the other students." Which I actually did, and which needless to say did not endear me to the faculty. In effect, a vicious cycle of fear, avoidance, mistrust and misunderstanding had been established, and this was a battle in which I felt powerless and incapable of establishing any kind of peace or reconciliation. Two years later, and the deterioration was dramatic. By now, I had the whole frenzied repertoire: terrifying voices, grotesque visions, bizarre, intractable delusions. My mental health status had been a catalyst for discrimination, verbal abuse, and physical and sexual assault, and I'd been told by my psychiatrist, "Eleanor, you'd be better off with cancer, because cancer is easier to cure than schizophrenia." I'd been diagnosed, drugged and discarded, and was by now so tormented by the voices that I attempted to drill a hole in my head in order to get them out. Now looking back on the wreckage and despair of those years, it seems to me now as if someone died in that place, and yet, someone else was saved. A broken and haunted person began that journey, but the person who emerged was a survivor and would ultimately 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 the people who've helped me. The fellow survivors, the fellow voice-hearers, the comrades and collaborators; the mother who never gave up on me, who knew that one day I would come back to her and was willing to wait for me for as long as it took; the doctor who only worked with me for a brief time but who reinforced his belief that recovery was not only possible but inevitable, and during a devastating period of relapse told my terrified family, "Don't give up hope. I believe that Eleanor can get through this. Sometimes, you know, it snows as late as May, but summer always comes eventually." Fourteen minutes is not enough time to fully credit those good and generous people who fought with me and for me and who waited to welcome me back from that agonized, lonely place. But together, they forged a blend of courage, creativity, integrity, and an unshakeable belief that my shattered self could become healed and whole. I used to say that these people saved me, but what I now know is they did something even more important in that they empowered me to save myself, and crucially, they helped me to understand something which I'd always suspected: that my voices were a meaningful response to traumatic life events, particularly childhood events, and as such were not my enemies but a source of insight into solvable emotional problems. Now, at first, this was very difficult to believe, not least because the voices appeared so hostile and menacing, so in this respect, a vital first step was learning to separate out a metaphorical meaning from what I'd previously interpreted to be a literal truth. So for example, voices which threatened to attack my home I learned to interpret as my own sense of fear and insecurity in the world, rather than an actual, objective danger. Now at first, I would have believed them. I remember, for example, sitting up one night on guard outside my parents' room to protect them from what I thought was a genuine threat from the voices. Because I'd had such a bad problem with self-injury that most of the cutlery in the house had been hidden, so I ended up arming myself with a plastic fork, kind of like picnic ware, and sort of sat outside the room clutching it and waiting to spring into action should anything happen. It was like, "Don't mess with me. I've got a plastic fork, don't you know?" Strategic. But a later response, and much more useful, would be to try and deconstruct the message behind the words, so when the voices warned me not to leave the house, then I would thank them for drawing my attention to how unsafe I felt -- because if I was aware of it, then I could do something positive about it -- but go on to reassure both them and myself that we were safe and didn't need to feel frightened anymore. I would set boundaries for the voices, and 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 and support one another. Throughout all of this, what I would ultimately realize was that each voice was closely related to aspects of myself, and that each of them carried overwhelming emotions that I'd never had an opportunity to process or resolve, memories of sexual trauma and abuse, of anger, shame, guilt, low self-worth. The voices took the place of this pain and gave words to it, and possibly one of the greatest revelations was when I realized that the most hostile and aggressive voices actually represented the parts of me that had been hurt most profoundly, and as such, it was these voices that needed to be shown the greatest compassion and care. It was armed with this knowledge that ultimately I would gather together my shattered self, each fragment represented by a different voice, gradually withdraw from all my medication, and return to psychiatry, only this time from the other side. Ten years after the voice first came, I finally graduated, this time with the highest degree in psychology the university had ever given, and one year later, the highest masters, which shall we say isn't bad for a madwoman. In fact, one of the voices actually dictated the answers during the exam, which technically possibly counts as cheating. (Laughter) And to be honest, sometimes I quite enjoyed their attention as well. As Oscar Wilde has said, the only thing worse than being talked about is not being talked about. It also makes you very good at eavesdropping, because you can listen to two conversations simultaneously. So it's not all bad. I worked in mental health services, I spoke at conferences, I published book chapters and academic articles, and I argued, and continue to do so, 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 listened to my voices, with whom I'd finally learned to live with peace and respect and which in turn reflected a growing sense of compassion, acceptance and respect towards myself. And I remember the most moving and extraordinary moment when supporting another young woman who was terrorized by her voices, and becoming fully aware, for the very first time, that I no longer felt that way myself but was finally able to help someone else who was. I'm now very proud to be a part of Intervoice, the organizational body of the International Hearing Voices Movement, an initiative inspired by the work of Professor Marius Romme and Dr. Sandra Escher, which locates voice hearing as a survival strategy, a sane reaction to insane circumstances, not as an aberrant symptom of schizophrenia to be endured, but a complex, significant and meaningful experience to be explored. Together, we envisage and enact a society that understands and respects voice hearing, supports the needs of individuals who hear voices, and which values them as full citizens. This type of society is not only possible, it's already on its way. To paraphrase Chavez, 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. For me, the achievements of the Hearing Voices Movement are a reminder that empathy, fellowship, justice and respect are more than words; they are convictions and beliefs, and that beliefs can change the world. In the last 20 years, the Hearing Voices Movement has established hearing voices networks in 26 countries across five continents, working together to promote dignity, solidarity and empowerment for individuals in mental distress, to create a new language and practice of hope, which, at its very center, lies an unshakable belief in the power of the individual. As Peter Levine has said, the human animal is a unique being endowed with an instinctual capacity to heal and the intellectual spirit to harness this innate capacity. In this respect, for members of society, there is no greater honor or privilege than facilitating that process of healing 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. And likewise, for survivors of distress and adversity, that we remember 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 very wonderful doctor once said to me, "Don't tell me what other people have told you about yourself. Tell me about you." Thank you. (Applause)