Agnes's Jacket

A Psychologist's Search for the Meanings of Madness.Revised and Updated with a New Epilogue by the Author

Gail Hornstein

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351535953
• Edition: 1
• Topic: Psychology
• Subtopic: Clinical Psychology
• Index: Psychology

In a Victorian-era German asylum, seamstress Agnes Richter painstakingly stitched a mysterious autobiographical text into every inch of the jacket she created from her institutional uniform. Despite every attempt to silence them, hundreds of other psychiatric patients have managed to get their stories out, or to publish them on their own. Today, in a vibrant network of peer-advocacy groups all over the world, those with firsthand experience of emotional distress are working together to unravel the mysteries of madness and to help one another recover. Agnes's Jacket tells their story, focusing especially on the Hearing Voices Network (HVN), an international collaboration of professionals, people with lived experience, and their families and friends who have been working to develop an alternative approach to coping with voices, visions, and other extreme states that is empowering and useful and does not start from the assumption that such people have a chronic illness.

A vast gulf exists between the way medicine explains psychiatric conditions and the experiences of those who suffer. Hornstein's work helps us to bridge that gulf, guiding us through the inner lives of those diagnosed with schizophrenia, bipolar illness, depression, and paranoia, and emerging with nothing less than a new model for understanding one another and ourselves.

1
The Voice Hearer

London, England, 1996

Helen Chadwick disliked doctors. But routine visits to her general practitioner, Dr. Thomas, weren’t that bad. Her office was in a large house, and the airy rooms and front garden were nothing like most National Health Service (NHS) clinics. On this particular day, beckoned by the bright sunshine that had finally broken a long spell of chilly May rain, Helen set out early for the short trip from her north London home to Dr. Thomas’s nearby office.

She got off the bus at the corner of the doctor’s street. The tree-lined row of neat stone houses looked just like those in her neighborhood. Tulips still bloomed in a few front gardens; the sun sparkled on a border of deep crimson dahlias. Helen walked slowly down the block, preoccupied by an upcoming meeting at work. She was chief cataloger at a branch library in one of London’s largest boroughs, and tight budgets were creating problems for everyone. Recent staffing cuts had left hundreds of books overflowing her office; she’d almost been hurt the day before when an avalanche of them crashed near the door. With any more layoffs, she’d be left with the work of a whole department.

Suddenly, a voice yelled, “Who the fuck are you?” Yanked from her reverie, Helen whirled around to see who was shouting at her. She saw no one. “Why ain’t you at work?” the same man demanded in a booming tone. “You think doctors have time to waste on scum like you?” Helen froze, shocked that anyone on this quiet street would speak so rudely to her.

But where was the man? The street was empty. He was foul-mouthed, almost obscene, not the sort of person who’d live in a leafy neighborhood like this. He had to be in one of the houses, yelling through a window; no one was on the sidewalk. “Yeah, who the fuck she think she is, walkin’ down the street ’stead a’ goin’ to work?” a woman’s shrill voice rang out. Helen swung around. She still couldn’t see anyone. The sounds seemed to be coming from one of the smaller houses she’d just passed. But no one was at the windows; every door was shut. “Get your stinkin’ ass out of here,” the man snarled. Terrified, Helen began to run. Dr. Thomas’s office was at the end of the block. Pushing open the gate so quickly she practically fell through it, she stood for a moment in the garden, trying to catch her breath.

Whatever had just happened, it was over now, she told herself. Besides, she was at a familiar, safe place, a place of help. Her heart still pounding, Helen rapped on the front door and then, when the buzzer sounded, walked unsteadily to the waiting room just down the hall. Other patients sat reading magazines or chatting quietly with relatives. Two small boys in the corner were giggling over a comic book. Helen gave her name at the reception desk and settled into a chair, trying to breathe deeply, as she’d once learned at a stress-reduction seminar. After a few minutes, she took the novel she’d been reading on the bus out of her small leather purse. Anita Brookner’s calm, deliberate prose seemed especially welcome at this moment. She read a few pages and started to feel calmer.

“I told you to get out,” the man hissed in her ear. Helen stopped breathing. How could she still hear his voice, the same one she’d heard outside in the street? It must be her memory playing tricks on her, replaying something he’d already said. She shook her head, as if to dislodge the thought. “Hey, cunt, I’m talkin’ to you,” the voice whispered. Helen jumped up. Her eyes darted to the waiting patients. Had one of them spoken? Had they heard the man? They all seemed occupied, as before. No one even glanced up. Helen crumpled into her chair. She felt odd, as if she were in an episode of The Twilight Zone, simultaneously in two worlds. Nothing this strange had ever happened to her. She was pragmatic and sensible, hardly someone given to experiences of the occult.

“Helen Chadwick.” Suddenly Dr. Thomas was beckoning to her from the reception desk. Helen tucked the book back into her purse and slowly stood up. The doctor nodded and set off briskly for her office, two floors above. She was halfway up the stairs before Helen had taken her first step. “You got one more minute, you stupid cunt, to get out of here,” the man screamed. Overcome with fright, Helen bolted to the door and shot outside. She was almost to the corner by the time a sweating Dr. Thomas caught up with her.

“What’s going on?” the doctor asked.

“Someone told me to leave,” Helen mumbled.

“What? That’s nonsense. Come back to the office,” said Dr. Thomas, gently steering them both toward the house. Helen numbly did as she was told, just as she’d done with the screaming man. Everyone seemed to be ordering her about. She felt frightened, at the mercy of unknown forces. They were all so insistent that she couldn’t refuse their demands.

“Are you all right? What happened? Were you hearing voices?” she heard Dr. Thomas ask from somewhere far off. Although she didn’t work as a psychiatrist, Dr. Thomas had trained in the field, so she knew more about mental illness than the average GP. Helen felt as if she were in a tunnel. Sounds were tinny and there was an echo, distorting the words. “No,” she murmured as a voice bellowed, “Don’t tell her anything!”

Later, waking confusedly as afternoon sunlight streamed into her bedroom, Helen tried to work out what had happened. Had she been having one of those vivid nightmares, the kind that seem real even after you wake up? But why would she be sleeping in the daytime instead of being at the office? Then she caught sight of the bottle of pills Dr. Thomas had given her and realized with horror that the events of the morning had indeed occurred. What if those dreadful voices started up again? A terrifying thought. Was the stress at work getting to her? Did she have a brain tumor? An article she’d recently read about people with brain cancers had mentioned hallucinations as a symptom. Maybe she had some terrible neurological ailment. Or, even more frightening, what if she were cracking up? A colleague at work who’d studied psychology once remarked that nervous breakdowns can happen to anyone.

Not wanting to tempt fate, that evening Helen didn’t say a word to her partner about her trip to the doctor. “I thought it was better to keep the whole bizarre experience secret,” she told me later. “Talking about it might only bring it back or make me more frightened.”

Helen didn’t return the next week for the follow-up appointment Dr. Thomas had scheduled. For four months, she didn’t tell anyone what was happening inside her head. The voices came and went—appearing several times in a day, or mercifully being absent for a week or more. Sometimes it was the man alone; sometimes the woman joined him, or there was another man whose accent was Scottish. Their language was filthy. Helen had never heard anyone speak words like that aloud. She couldn’t even repeat them to herself; telling anyone else about them seemed unimaginably mortifying.

But keeping the secret took its toll. Struggling not to respond outwardly to the voices, or even to give any sign of hearing them when others were present, exhausted her. It became harder and harder to concentrate on any task. Helen began avoiding friends and gave vague reasons for not going to work. On particularly bad days, she couldn’t tell the difference between the voices in her head and those of her colleagues. Being out in the street was particularly distressing; she could never tell whether the voices she heard were inside or coming from people nearby. Sometimes, accosted by a voice while in a shop, she would panic and run away, even in the middle of a transaction.

At home, her partner found her increasingly distracted and withdrawn. When guests came for dinner, Helen rarely spoke, and often she looked from one to another as if she couldn’t follow the conversation. She started refusing to watch her favorite TV shows; if she happened to walk through the room when someone else was watching television, she stared at it intently, as if trying to work out its purpose.

In September, four months after her original visit to Dr. Thomas, Helen Chadwick signed herself into a mental hospital at the urging of her distraught and mystified partner. Dr. Krishnan, the psychiatrist assigned to her case, barraged her with questions. “Where are you? What day is it? Who is the prime minister? Do you have headaches? Problems eating? Night sweats? Double vision? Do you hear voices?” As soon as she mumbled yes to that last one, he ended the intake interview and she was prescribed Haldol, an antipsychotic medication. It had a slight dampening effect on the voices, making them sound as if they were coming from a long metal tube. But it made her so dopey she could barely shuffle from the toilet to the dayroom. Besides, the voices were still there. The drug made it impossible for Helen to read or follow the action in even the simplest TV show, so the net effect of the treatment was that the voices were more of a torment. They might be fainter, but now there weren’t any ways to escape from them.

After a few weeks, Helen stopped thinking that the voices might be real people speaking to her from some unseen place. She knew they were in her mind, but this “knowing” was theoretical, like knowing the earth is round. It doesn’t look round. The voices didn’t seem like they were inside her; they sounded as though they were coming from across the room or down the street. She heard them through her ears; they were nothing like thoughts or talking to herself. And because they didn’t sound remotely like her, because they constantly said words she never uttered, it was difficult to conceive of them as her creation.

Helen Chadwick’s first hospitalization lasted more than a year. Neither the medication nor the electroshock treatment she was given made the voices disappear. Removed from her job on grounds of disability, she spent most of her time tormented by the demands of screaming people inside her head. Helen could no longer travel into Central London on the Underground; one of the male voices kept daring her to jump onto the tracks as a train approached. If she went for a walk in her neighborhood, the shrill woman urged her to dart into traffic at busy intersections. For much of the past seven years, Helen’s life has been a nightmare of fear and persecution from people others can’t hear.

Yet compared with many mental patients, she is fortunate: Her partner of more than thirty years has loyally stood by her, and Helen lives in Britain, the worldwide center of the Hearing Voices Network (HVN).

Traditional psychiatric views classify voice hearing as an “auditory hallucination,” a neurological event that is invariably pathological and should be stopped if possible. An underlying disease process such as schizophrenia is assumed to cause this kind of brain dysfunction. Asking a patient about the speakers or the content of the voices is seen by most psychiatrists as dangerous or useless, a way of “colluding” with the illness that can’t possibly help the patient. Aside from asking the few questions necessary to determine that the experience is taking place, physicians rarely talk to patients about their voices.

“For the seventeen years that I was treated unsuccessfully for ‘auditory hallucinations,’” one patient commented recently, “my psychiatrists seemed to view my voice hearing experience as nothing but the random fluctuation of neurotransmitters in my brain. No one ever asked me about it.” Having turned to physicians for help in understanding these confusing or frightening mental states, patients often find their doctors’ lack of interest perplexing. Simply being told to take their medication and ignore what’s happening in their minds makes them feel more alone and strange. And those for whom the medications don’t work at all—a sizable percentage—feel frustrated by their physicians’ insistence that they keep taking them anyway.

New York City, 2002

On a subway train in Manhattan, the voice of a woman announces every stop, and then a man’s baritone booms out, “Stand clear of the closing doors, please!” Two men near me murmur quietly in Spanish; a mother scolds her whiny child in the seat opposite. I am alone, so nothing distracts me from what all these voices are saying. They surround me. I find this exhilarating. It’s one of the things I love most about big cities.

The voices I’m hearing are nothing like Helen Chadwick’s or the ones in Welcome, Silence, the book I’m reading. It’s the story of a woman named Carol North, who was tormented for years by people who taunted and threatened her. No one else could hear the people Carol heard in the way everyone in this subway car can hear the voices I’m listening to. And hers certainly weren’t exhilarating; they terrified her. They criticized everything she did, gave ominous warnings, and never stopped harassing her. She couldn’t just walk away to stop hearing them, the way I can with the voices on this train. Carol North’s voices tortured her day and night—at school, in bed, walking down the street. They were unrelenting and everywhere.

They began when she was 6 years old and turned her ordinary life in a Midwestern American town into a frightening test of endurance. She could barely hear her teachers over the din inside her head. Nights brought hours of cowering under the sheets to avoid their attacks and threats. Carol also had horrifying images. The birds she passed on her walk to school seemed to be dive-bombing her. She saw fires burning in her house; “interference patterns” swirled in the air around her.

At first, Carol’s terrors attracted the attention of her parents and pediatrician. But because she was so young, and because she’d always been a “sensitive” and unusually imaginative child, her doctor dismissed her voices and visions as “attention seeking.” He told her parents to ignore them and reward her for behaving “normally.” Carol learned to lie about how she was feeling, and she made it through school on sheer determination.

Suddenly, the subway train jolts and stops abruptly. I look up from my book. The woman sitting across the car is eyeing me suspiciously. She says something to the woman next to her. They both frown and glance in my direction. If I were Carol North, I’d worry that they could see inside my mind, could hear the voices criticizing everything I did. But this isn’t what I think. I think they’re a coincidence, their comments and glances. I don’t think they’re talking about me at all. I’m still enjoying the sound of voices everywhere around me, even though reading Carol North’s book reminds me of how frightened she or Helen Chadwick might be feeling at this moment.

Helen first heard of HVN while she was still in the hospital. “It was a terrible time,” she told me later. “I’d been battered with shock treatments. My psychiatrist relentlessly gave me drugs I didn’t want to take. My head felt as if it were filled with custard. Reading was impossible; the print just danced on the page. We passed our time on the ward doing little but sitting around in a drugged haze.

“Then one day, all the doctors were away at a conference, so the intern came in to check on me. There was a shortage of nurses on that ward, and for a few minutes he and I were alone in the room. He told me he’d heard that there were self-help groups for people who heard voices. He thought I might benefit from attending one. But he didn’t give me any idea of how I’d contact them, and I was too confused to think to ask him. A few months later, though, I came across a copy of Equilibrium, a newsletter published occasionally by the NHS for psychiatric patients. There was an article about the creation of a hearing voices support group right here in North London.

“When I finally got out of hospital months later, I telephoned to inquire about it. It turned out that a group was just starting at my local day center. A staff member there gave me a book called Accepting Voices by a doctor in Holland called Marius Romme. Someone came down from Manchester to help our group get organized. He said he was from the national office of the Hearing Voices Network, and ours was one of 150 voices support groups across Britain. I thought I’d faint. I had no idea there were so many other people struggling with the same problem as I was.”

Margery Kempe heard voices, too. Hers were frightening like Helen’s, but they were also wonderful and awe inspiring. Margery heard the voice of Jesus. He spoke to her lovingly, called her “my daughter,” and said he would guide her life onto a more spiritual path. Margery came from a prosperous English family just as Helen did, but their fates were radically different. Margery lived in the fourteenth and fifteenth centuries, so her voices made her a visionary, not a mental patient.

Margery Kempe was a deeply pious woman living at a time when pious people routinely had unusual experiences that marked them for special treatment. But unlike many of her contemporaries across Europe—Bridget of Sweden, Catherine of Siena, Julian of Norwich, Joan of Arc—Margery was not a cloistered nun or a celibate or a recluse surrounded by others immersed in prayer and abnegation. She lived in Lynn (now King’s Lynn), a center for trade near England’s eastern coast. Her father, John Brunham, was the foremost citizen of the town, five times its mayor and a prosperous merchant. At age 20, Margery married John Kempe, a successful tradesman, and went on to have fourteen children with him. She was a busy, enterprising woman, running a household and working occasionally as a miller of grain or a beer brewer. Nothing about her early life suggested a future as a mystic.

But after the birth of her first child, Margery fell into a state of profound despair. She barely moved; she spoke to no one for several months. At times she seemed close to death. Then she began having fits of violence, screaming that she was being tortured by devils with mouths of fire. She publicly denounced her husband and father, the two people closest to her. She bit her own body, tried to tear off her skin with her nails, openly lusted after other men. Finally, she had to be tied up to prevent her from killing herself.

One day, Jesus appeared at the side of Margery’s bed. He was in the likeness of a man, clad in a mantle of purple silk. He said, “Daughter, why have you forsaken me, when I never forsook you?” Then the sky opened and Jesus gradually ascended. Margery’s mind was calmed. It was as if she had just awakened from a coma and been fully restored to her life as a loving and effective wife and mother.

From then on, Jesus visited her regularly, speaking at length and asking that she proclaim his message to the world. Margery Kempe became a public figure. Like Julian of Norwich, a prominent mystic living in a nearby English town, Margery felt singled out for a special role as a holy figure.

Her intense religiosity put her at odds with her husband and neighbors. She prayed constantly, dressed only in white, and refused meat and wine, two staples of her di...