VOICES CARRY- from the PHOENIX by SI Rosenbaum

This is such a great deeply provoking article, Hope you enjoy it as much as I did.

You can see it here on the Phoenix website

http://thephoenix.com/Boston/life/128668-voices-carry/?page=1#TOPCONTENT

MAD SKILLS Diagnosed as a schizophrenic, Marty is a facilitator for a support group where people who hear voices help each other cope.
HOLYOKE — She can hear a baby crying.

She searches the house, each cluttered room, the closets, under the bed. She checks the cupboards. She checks behind the shower curtains.

There is no baby.

She can still hear it wailing.

***

She has renamed herself Marty. She hopes it might help her pull things together. The voices say she’s worthless. She tries not to listen.

Here she is in daylight: her hair short, her legs unshaven, her eyes the dark eyes of a Byzantine saint. Her skin is covered in tattoos, some homemade, and covered also in scars: thin white lines, especially on her left arm and on her chest, a fine crosshatching like the lines in an old engraving. When she starts a new job — she works as a personal care assistant for the elderly and disabled — she wears long sleeves, until she feels that her employers know her and trust her. Only then will she let them see her arms, the visible record of her pain.

There are scars on her mouth, too; older ones.

Marty is 52. She has been homeless and spent time in psych wards. She has been diagnosed with major depressive disorder, schizoaffective disorder, post-traumatic stress disorder, and psychotic disorder “not otherwise specified,” which means she hears voices and no one knows why. She has been prescribed Prozac, Thorazine, lithium, Risperdal, Haldol, Lopax. She has also raised children, and gotten her BA. She was only recently discharged from a voluntary stay at the psych ward at Holyoke Medical Center. She’s struggling with side-effects from her current meds.

From the house she shares with her grown daughter, it’s a mile and a half to downtown Holyoke. She passes bars, liquor stores, young drug dealers and their clients. Mamas strolling babies, men selling bootleg DVDs. The Western Mass. Resource Learning Center, a mental-health wellness collective, is on the third floor of one of Holyoke’s dilapidated but still beautiful brick buildings.

The group meets in the library. It’s like a big living room, lit by a few lamps, the walls lined with books. There are three overstuffed sofas, a TV, and a coffee table. When Marty started coming here, she sat in the rocking recliner in the corner, content to be silent but not alone.

Now she takes the seat on the couch furthest from the door, where she can make eye contact with everyone in the group. These are the people she has come to trust — who have, perhaps more importantly, come to trust her.

“Welcome,” she says, “to the Hearing Voices group.”

***

What does it mean to hear a voice when no one is there?

It is a very old question, and a terrifying one. Voice hearing, as a phenomenon, is scary — for the voice hearer but also for everyone else. It’s so scary that we joke about it — I DO WHAT THE VOICES IN MY HEAD TELL ME is emblazoned on T-shirts — and we associate voice hearing with violence.

But voice hearing also terrifies us because it calls two things into question: the reliability of our senses, and the indivisibility of our minds. We all like to think that our senses faithfully report the real world, but that’s not always the case. We like to think we are the sole inhabitants of our heads, but the truth is that there is a ton of things going on in the brain, and consciousness is only one of them. That is never more evident than in voice hearing.

“Psychiatry has always been torn between two visions of mental illness,” writes Edward Shorter in A History of Psychiatry. “One vision stresses the neurosciences, with their interest in brain chemistry, brain anatomy, and medication, seeing the origin of psychic distress in the biology of the cerebral cortex. The other vision stresses the psychosocial side of patients’ lives, attributing their symptoms to social problems or past personal stresses to which people may adjust imperfectly.”

The conflict between these two ideas has played out in different ways in the United States and in the United Kingdom. In both places, psychiatry has come to view madness as a brain disorder, treatable with drugs. But if you’re psychotic in Britain, you are increasingly likely to be referred to the your local Hearing Voices group — part of a network of support, by and for voice hearers, which has thrived in the UK for the past two decades.

The Hearing Voices movement holds that voice hearers aren’t necessarily crazy — that they deserve to be dealt with on their own terms. These are ideas that fly in the face of psychiatric orthodoxy. Yet the Hearing Voices Network has become a part of mental-health care in the UK, and it has gone international, with groups in at least 20 countries.

Now, the first Hearing Voices groups are starting to form in the US. The epicenter of the movement is here in Holyoke — in this room with its wall of books and its lamps and its couch, in this group of people for whom Marty has become a leader.

***

There’s a baby crying, a piercing wail from a misshaped mouth.

The delivering doctor, the child’s uncle, weeps when he sees her — sees the cleft palate stretching up through the roof of her mouth into her nose.

That’s how Marty tells it: the story of her birth, in 1959. She is born to a prosperous family in West Roxbury, the descendants of a Lebanese Christian immigrant who had palled around with the writer Kahlil Gibran. The immigrant’s last name was Arabic and unpronounceable, so Gibran told him to adopt the name el-Haj, a name taken by those who makes the pilgrimage to Mecca. I know you’re not a Muslim, Gibran said, but you’ve certainly travelled around enough to earn the title. So Marty’s last name means “pilgrim” — someone on a journey.

Now the baby is on a journey to a hospital: there will be surgery and more surgery, a bone graft and a skin graft. She can’t nurse. When she is older, in yet another surgery, her lips will be sewn shut for a time and she’ll eat through a straw. She will grow up knowing that she is ugly.

The child is also aware, somehow, that her disfigurement is a birth defect caused by her mother’s alcoholism during pregnancy. Perhaps, Marty thinks, that’s why her mother is so cruel to her.

“It must have tore her up every time she looked at me,” Marty says. “The guilt she must have had. She was the kind of person who would hit you and then hold you and cry and ask for you to love them. How could you love them?”

Her father comes home from work and asks, Which one of you children put a hole in the wall?

The children laugh: Mom did it, Mom did it.

Later, Marty won’t remember when the voices start, but she’ll remember what they say.

It’s either you or your mother. It’s a man’s voice, low and resonant. It’s not in her head; it’s in the room. It sounds as if he’s standing a little to her right. You or your mother. Decide now, because one of you has to go.

It doesn’t seem stranger than anything else that has happened to the girl with the scarred mouth.

“It was normal,” she’ll remember, “because everything was insane.”

***

 

In the early decades of the 20th century, it looked like the psychological view of madness was winning out.

The Talking Cure was in its golden age, and for Freud and his followers, the symptoms of madness were loaded with meaning. Analysts sought the roots of illness in the traumas of childhood, the unloving mother or the abusive father.

For doctors who took the biological view, therapeutic tools were few and crude — the electric shock, the insulin coma, the ice-pick lobotomy.

But it was also the dawn of the age of modern chemistry, when scientists the world over were experimenting with new compounds, looking for ways to use them.

In 1946, a French pharmaceutical company discovered that a particular chemical — originally developed as a synthetic blue dye — had a curious effect on surgical patients. It calmed them without knocking them out, inducing “a euphoric quietude,” a state of dispassionate, unsedated clarity. The company developed it as a tonic for the anxiety and agitation associated with psychosis.

Within a few years, the new drug was in use in asylums throughout Europe and the US. It was marketed as Thorazine.

Thorazine was a turning point for psychiatry. It wasn’t just that there was finally a pill for insanity: the drug offered an explanation for insanity itself. Since Thorazine changes the amount of the neurotransmitter dopamine in the brain, it seemed to stand to reason that psychosis was caused by a dopamine imbalance. This was evidence of a real, physical cause of madness — one that doctors could correct, just as they could correct the imbalance of insulin in diabetics.

For so many people with mental illness, and for their families, the medicalization of madness was a relief. If schizophrenia was a physical problem, it meant that no one was to blame. The mad could no more be blamed for their condition than can diabetics or quadriplegics.

The problem of madness seemed to have been solved.

“We must realize that mental problems are just as real as physical disease, and that anxiety and depression require active therapy as much as appendicitis and pneumonia,” one New York University professor wrote in 1947. “They are all medical problems requiring medical care.”

***

They cut the baby out of her womb, crying. It’s not Marty’s first pregnancy, but Amelia is the first child she is able to raise; her tiny mouth is perfect, but she wails for weeks until Marty figures out that she’s allergic to milk. It doesn’t matter. Marty loves her more than she has loved anything.

It’s 1985, and Marty is 26 now. She’s had a long, bad time — after she left home to go to UMass, after she dropped out, after she discovered that heroin felt like a warm blanket and made the voices quiet. She’s slept on floors and in cars and in strangers’ beds. She has spent a year in an apartment of Toronto, where she heard men and women telling her she was only safe as long as she didn’t go outside.

But now that’s over; she’s gotten clean, and her husband has gotten sober. And there’s Amelia, her brown eyes fearless and direct. With Amelia, and later with her younger children, Marty paints pictures and makes crafts; they go exploring in the woods; they plant a garden; they put on their own parades; they make costumes and play music. When Amelia is an adult, she’ll remember this part of her childhood as charmed. “When I was little my mother loved me very, very much,” she’ll say. “We did tons of fun things together all the time.”

For now, the little girl asks questions about everything. Marty tries to answer them as best she can.

Why don’t you wear makeup? Amelia asks.

It’s because I don’t think I’m pretty, Marty says.

Why don’t you think you’re pretty?

When I was born they said I wasn’t pretty.

When Amelia asks about the scars on Marty’s mouth, Marty tells her about the surgeries she endured as a baby. When Amelia asks why sometimes Marty talks to people who aren’t there, Marty explains that she’s having an argument with her mother in her head. “It goes back and forth, and all the horrible things she would say pop up in my head, and then I say things back to her, but she’s not really there, and I can’t turn it off.”

Marty doesn’t tell her daughter that the voices sound like they’re coming from outside her head, not inside.

Without heroin, the only thing that works to quell the voices is pain. In the bathroom, Marty sits with a razor blade and slices red lines into her skin. Until it heals, the pain of the wound keeps things quiet. She can buy whole days of peace this way.

When Amelia asks about the scars on Marty’s arms, Marty tells her she was burned with acid.

***

The same year Marty’s daughter is born, in the Netherlands, a woman named Patsy Hage is falling apart.

Hage is 30 years old. Her diagnosis is schizophrenia, but she insists she isn’t crazy; she’s just hearing voices, terrible voices, telling her not to leave the house, telling her to kill herself. Antipsychotics make her slow and dull, but don’t quiet the voices at all. Hage grows more and more withdrawn. The only thing that brings her solace is a book — Julian Jaynes’s The Origins of Consciousness in the Breakdown of the Bicameral Mind, in which Jaynes argues that in prehistory, humans experienced their own thoughts as the external voices of gods. It’s the first explanation of the voices that make sense to Hage — the first indication that she isn’t alone, isn’t just sick.

Her doctor, Marius Romme, has been taught that the content of psychosis is meaningless and best to ignore. But now — as Hage speaks more and more often of suicide — piercing his patient’s increasing isolation becomes more important than convincing her that her voices are a symptom of a brain disorder.

So Romme does something radical: he arranges for her to meet with other patients who also hear voices.

“As I sat there listening to their conversations, I was struck with the eagerness with which they recognized each other’s experiences,” Romme later writes. “To my ears the contents were bizarre and extraordinary, and yet all this was freely discussed as if it constituted a real world of and unto itself.”

At the urging of Romme’s partner, journalist Sandra Escher, in 1986 he and Hage appear on a Dutch talk show, asking other voice hearers to contact them. They are deluged with replies. Within a few days, 450 voice hearers call the hotline. The odd thing is, about a third of them have never been diagnosed or treated as mental patients. And when Romme asks, they say they aren’t bothered by their voices at all.

How is this possible? As Romme begins to research voice hearing, he finds numerous studies showing that many people who have never been treated for mental illness — people who are healthy — hear voices. One study, conducted at Johns Hopkins just a few years before, estimates that about 10 percent of the general population will hear voices at some point in their lives. In the years to come, other studies will bear this out, and eventually, research papers on auditory hallucinations will take it for granted that there’s a portion of “normals” who hear voices.

On the other hand, as Romme and Escher interview hundreds of voice hearers, they find that most of them say their voices first appeared after a traumatic event, like an assault. If voices aren’t necessarily a symptom of disease, Romme thinks, are some people diagnosed with schizophrenia — people whose voices are disturbing — actually responding to trauma, and not suffering from an organic brain disease?

With these questions in mind, Hage and Romme organize a conference for voice hearers in Utrecht in 1987. In 1991, a group of voice hearers invite them to hold a similar conference in the UK.

Afterward, attendees begin to meet on their own, in local groups. This is how the Hearing Voices Network begins.

***

Marty is bleeding. She’s made a mistake, cut too deep. In the emergency room, she hears voices screaming at her, and she screams back. This is how she comes to be admitted as a psychiatric patient for the first time. It’s 2000.

She has been in the system before — as an addict, the many times she detoxed and relapsed. But this is different. The doctors explain that she has schizophrenia, which is a medical condition, like diabetes. There is a chronic chemical imbalance in her brain, and the voices she hears are symptoms of the disease. They tell her she’ll need to take medication for the rest of her life.

No one talks about recovery.

For Marty, being diagnosed feels like a trap closing. “I felt that I was no longer normal, and was permanently and totally fucked,” she’ll say later. “It’s hard to believe otherwise when everyone you try to get help from thinks that.”

She thinks her childhood was enough to make anyone sick. She remembers a quote from her long-ago year in college, from the writings of a radical psychiatrist named R.D. Laing: Madness is a sane response to an insane world.

But now she’s out of control and out of options. Over time, her memory of this first hospitalization will blur, become entangled with other hospital rooms. Which time was it that they kept her in a cold room by herself for four days? How many times has she been strip-searched?

She will take up smoking, so that when she’s hospitalized she’ll have an excuse to leave the ward and stand outside every day.

***

Three years after Marty’s first hospitalization, an American psychology professor called Gail Hornstein arrives in the UK, looking for the Hearing Voices Network.

Bespectacled and thoughtful, with a close-cropped cap of white hair, Hornstein has been fascinated with first-person narratives of madness since she was a teenager. Those narratives have made her question much of what she’s learned about psychiatry. In her book, Agnes’s Jacket — named for an asylum inmate who embroidered her narrative on her clothes — she will write: “For patients, madness isn’t about ‘scrambled electrical signals’ or ‘new breakthroughs in the exciting world of brain research.’ They write of captivity, insight, and resilience.”

In London, Hornstein finds a movement that has begun to establish itself in the British psychiatric world.

At the start, the Hearing Voices Network had faced a certain amount of hostility. Earlier “psychiatric-survivor” movements — like R.D. Laing’s — rejected psychiatry outright, sometimes idealizing madness as a shamanic gift. That history put psychiatrists on the defensive against any movement that presented itself as an alternative to medical care.

“We spend an awful lot of time trying to persuade people to have treatment. For someone to come along and say, ‘Live with your voices’ is not very helpful,” London psychiatrist Cosmo Hallstrom told the Observer in 2000, in an early article on the Hearing Voices Network. “I think untreated schizophrenia is dangerous, and the longer you delay treatment, the worse the outcome.”

But the movement’s leaders didn’t want to estrange themselves from psychiatry — they wanted to change it. Drawing inspiration from past identity-politics efforts like the gay-rights movement — which successfully demedicalized homosexuality — they started out by holding workshops for psychiatry professors in Sheffield, for psychiatric nurses in Manchester. They called it “community in-reach.”

Now, a decade since its founding, the network has chapters all over the UK, and across the world. Hearing Voices groups meet in hospitals run by the National Health Service, in prisons and high-security hospitals. The movement holds training modules for nurses and clinical-psych students at universities across the country.

To Hornstein, it’s a revelation. “The gap between what I was taught and what I’m starting to understand about mental illness is widening,” she writes later.

Back in her office at Mt. Holyoke College, Hornstein looks for local organizations similar to what she saw in England. She finds the Freedom Center, a mental-health resource network in Northampton.

Founded by two former psychiatric patients, Oryx Cohen and Will Hall, it’s an outlet for people with mental-illness diagnoses to talk freely about their experiences. “We started out hiding out in basements and whispering about how we didn’t like psychiatry,” Cohen recalls wryly, “and then when we realized the psychiatric police were not going to arrest us, we got a little more public.”

Cohen’s hippie parents named him after an African gazelle, but like most very tall men he’s a little gawky, with a gentle, toothy smile. When he was in graduate school, Cohen decided that his car could fly, wound up in the emergency room, and embarked on an inquiry into the nature of insanity. Now, he says he “experienced altered states.”

He and Hornstein become colleagues. In 2008, they start their own Hearing Voices group in downtown Holyoke. It’s one of the first of its kind in the US.

***

 

The woman with the scars sits in the corner chair and rocks, and doesn’t look at anyone.

She is here because she typed the words “peer support” into a search engine, after nearly 10 years of doctors, of mental wards, of medications. She wanted to quit that circus. She found a listing for this group, and chose it because it’s close enough to walk to.

Sometimes when she’s here, she feels like she’s floating above her body, watching the group like it’s a TV show. Sometimes she feels herself shut down, go flat and numb to the present.

Oryx Cohen keeps an eye on her. She looks like a wreck — “Not somebody I would expect a whole lot from,” Cohen will recall candidly. But he doesn’t write her off. He and Hornstein have both had too many experiences with people who have been written off who end up surprising them.

So they let Marty sit in silence, while the group members — there are about 12 — talk about the voices they hear. No one tells them they’re imagining things, no one suggests they’re sick or ill. The group members make suggestions, swap ideas: write down what your voices say. Talk to them. Tell them to come back later. They don’t tell anyone to stop taking their medications, but if someone wants to, they help them ramp down safely.

From the corner chair, Marty takes it all in. It’s months before she starts to talk. When she does, Cohen is amazed at how smart she is. He also notices that she has a gift. “Even though she was having a very hard time, she was always able to listen to other folks in the groups,” he sayys. She gives little pieces of advice, things no one else would have thought of. Often, it works.

Say a guy comes in trembling with adrenaline, telling them his house is staked out, he hears people talking about him on the telephone, he knows he’s being targeted. It’s because of his secret job with the CIA.

Does the CIA give you any vacation time? Marty might ask him.

It takes a year before she tells them about her own voices.

She calls the worst one a demon, because it wants her dead. It tells her she has always been a defective disappointment; anyone who thinks different just doesn’t know her yet. She deserves to die and it would be a blessing to others and it’s a matter of time, she should quit dragging it out.

The other group members nod. This is nothing unusual. A lot of them hear voices like that.

In the fall of 2010, Cohen and Hornstein invite some of the UK founders to come hold the first American training session for Hearing Voices facilitators. They decide that Marty and another woman should take the facilitator-training course.

Marty isn’t sure she’s stable enough to be a facilitator. To be honest, neither are they.

But they convince her to try.

During the session, the trainer looks straight at her. What are your voices like? he asks.

It gobsmacks her. No one has ever just flat-out asked her that before.

***

What does it mean to hear voices?

Marty says:

It’s like being separated from a part of yourself.

The voices are keepers of our worries or wants or something stored in us, and when they speak, even if they are generated by us, they are separate from us. I know I have had voices that I call demons — they sounded like demons separate from me. They were full of all the negative thoughts and words stored up in me based on the words and deeds that happened or were said or done to me.

Sometimes some voices seem to be God or a ghost trying to communicate with me.

So I guess, in short, that voices are self-generated but an external representation. However, I would not be surprised if we learned that voices were spiritual creation. I wonder how the body is able to do that.

***

In A History of Psychiatry, Shorter wrote that the biological and psychological perspectives on madness are “polar opposites.”

“Either one’s depression is due to a biologically influenced imbalance in one’s neurotransmitters . . . or it stems from some psychodynamic process in one’s unconscious mind,” Shorter wrote. “Both cannot be true at the same time.”

But in fact, both are true. If Marty takes a dose of Thorazine, it changes the biochemical reality of her brain. But the experience of going to the Hearing Voices group also changes her brain. Over time, it will even make her neurons form new connections, throw out runners, form new structures and pathways.

Drawing a distinction between the mind and the brain is impossible when all of our experiences — our memories and emotions, fears and desires — exist as chemical transactions between billions of neurons, trillions of synapses. As Quincy pediatrician Mark Vonnegut (son of Kurt) wrote about his own experience with madness: “Maybe it was all in my head, but where else is there for anything to be?”

We haven’t solved madness. The best that can be said of psychopharmaceuticals is that they help some people, some of the time. And the theory behind the drugs — that they restore some chemical imbalance in the brain — hasn’t been borne out by research. We don’t know much more about the causes of madness now than we did in the 1940s.

Any truly useful approach to madness is going to have to embrace both the biological and the psychological. And so far, this seems to be the Hearing Voices movement’s biggest strength.

Over the past few months, Gail Hornstein and leaders of the UK branch of the Hearing Voices movement have held facilitator-training sessions up and down the East Coast. Would-be group leaders have come from all over the country to be trained, and gone home to start their own local Hearing Voices groups.

Hornstein said she hopes the movement takes off here the way it has in the UK and elsewhere.

“The United States invented self-help,” she says. “Of all the places in the world, the US culture should be receptive to people taking responsibility for themselves, and helping each other.”

***

In March, Marty’s mother dies. Things get bad for a while.

Her thoughts go out of control, and she feels the blood buzzing in her head. When she talks to Amelia — now 26, a registered nurse with a husband and child — Marty hears her daughter’s voice saying things that she isn’t actually saying. It’s like a badly dubbed movie. Marty hears Amelia ask her why she hasn’t kept her promises, why she’s been such a terrible mother.

If Marty responds, Amelia stares at her with concern. Mom, what you’re saying is making no sense, Amelia says. So Marty stops saying anything. She writes to everyone she knows, announcing that she’s changing her name.

It helps that she has found a psychiatrist she likes — a man who, when she asks him what her diagnosis is, tells her she’s a human being. Together they decide she should go back into the hospital for a while. Oryx Cohen and other members of the Hearing Voices group visit her on the psych ward. They bring her cigarettes and Diet Coke, help her file her release forms.

She comes home after a week.

Not long afterward, Marty and I are sitting in her driveway in the late-afternoon sun. Neighbor kids are playing in the next yard, and every once in a while she calls out to them to banter and joke.

She tells me about reflex-punching a doctor who had tried to give her an unnecessary physical exam during her hospital admission.

“I got a private room after that,” she jokes. “A little sparse on furniture, but private.”

As I’m getting ready to leave, she suddenly tells me, “I’m not the best person for you to write about.”

Why? I ask.

Because she’s still unstable, she says, because she can’t show that Hearing Voices is a cure. “I have gained some control,” she says, “but there are other people in the group who are more stable, less likely to end up in the hospital.”

I don’t know what to say. I want to tell her that sometimes there isn’t a cure. That there doesn’t have to be a cure for people to get better.

And if Marty is still struggling — well, look at her. She works and takes care of Amelia’s baby son and struggles with her voices and sits in the book-lined room and helps other people struggle with theirs. If her journey isn’t over, what else would you expect from a woman whose name means “pilgrim”?

***

There’s a baby crying, somewhere.

Marty has searched the house, upstairs and downstairs, and looked in all the rooms. The siren wail goes on and on, but the house is empty.

Marty sighs with relief.

Thank God, she thinks. I’m only hearing voices.

SI Rosenbaum can be reached at srosenbaum@phx.com.