Making a Truce With the Voices in Your Head

Inside New Zealand voice hearers' fight to reclaim autonomy in mental health.

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Dec 4 2017, 1:09am

In a small room in the west of Auckland, seven people have gathered. It’s a Thursday evening. Traffic is heavy, crawling in from the city. It’s a nondescript meeting room, with a whiteboard in the corner, a large, polished wood table. On the table there are salt and vinegar chips, two carafes of water, a plate of ginger kisses, peppermint tea.

Sarah’s* voices simply arrived one day, she says. For a long time they weren’t there, and then one day they were.

The way she describes their arrival sounds like the discovery of a sudden intruder: like being home alone, and walking down the stairs to find an unfamiliar man standing in the lobby. Who is he? How did he make an entry? Does he mean you harm? Is there any way to make him leave?

“I think one of the big things at first is the fear: who is it? Who are you?” she says. “It took me a while to realise, some of them are me.”

For a while, Sarah’s voices went through a phase of waking her up at all hours of the night. “They’d wake me up, complaining, saying there’s no bloody food in the fridge, nothing to eat. I’d say, ‘go down the road and get a takeaway, it’s 2 AM!’

The group laugh.
“But then I started thinking about the Buddhist practice, they have in Bali, where they leave small offerings of food out for their ancestors.” She started leaving out small plates of vegetables. Her voices let her sleep through the night.
“I thought, maybe my ancestors are just bloody hungry.”
Sarah has a decade learning to live with her voices, and a gift for metaphor and comic timing.
At one point, she tells the group, she called the marae, to tell them what was happening. “And they said ‘you’ve got a gift!’ and I was like, ‘ok, well can I return it?’”
The room dissolves into laughter.

This is the Hearing Voices network, a long-standing group of New Zealanders who hear voices. Some have a schizophrenia diagnosis, some are sectioned under the Mental Health Act, and subject to compulsory treatment. Some have developed a kind of companionable truce with the voices they hear, others are battling to tug back autonomy from a cast of characters who are controlling or cruel. They meet in this small room, once a month or so, to support each other and discuss their voices: what they’ve been saying, whether they’ve been listening, how they’re coping with the various personalities clamouring for attention. They share the latest information on treatments, the possible side-effects of drugs they might be prescribed.

People use different frameworks to describe their voices. Some might be an especially rowdy subconscious, drawing attention to particular fears or buried secrets. Others hear from ancestors or old passed away friends—spirits who’ve chosen to stay. Some wonder if they’re more in touch with a spiritual realm—that there are angels and demons visiting.

"Sometimes I hear them and think, I’m not going to let you tell me what to do! Because if they’re not going to treat me properly, I’m not going to trust them.”

Sarah, the group’s facilitator, looks around. “How many of you are currently under the Mental Health Act?”

A few hands raise.

“You know, Samantha isn’t here tonight, but she just got off the Mental Health Act after five years,” Tracy says.

“Oh she must be so pleased,” says Annabel. She’s wearing a blue beanie, a worried expression, and her support worker is here accompanying her. She raised her hand earlier—Annabel is still under the Act herself. Her voices can be cruel and controlling, and she’s been struggling for some time to keep them under control. This week she’s been making some progress at resisting their instructions.

“Sometimes I hear them and think, I’m not going to let you tell me what to do!” she says. “Because if they’re not going to treat me properly, I’m not going to trust them.”

Her knee jiggles as she speaks. The water in the glasses on the table trembles.

“Other times I think God, I’m a bit scared.”

The group is quietly encouraging. “Well that’s good then, that means you’re standing up to them a bit?”
“Hmmm,” Annabel says. “Well, you know,” she looks up. “If they’re not going to behave properly then I can’t trust them with my life. If they tell me to do something and my life is in danger. Then I don’t know what to do.”

“Seems like you’re really finding your own strength. And how are your voices reacting to that, do they like that? Do they leave you alone, or?”

“Sometimes they just won’t be quiet.” She sighs. “It’s just minor things I don’t do what they tell me. I heard a voice on the radio saying, ‘You’re always gonna do what we say, baby.’ And I thought, no I’m not. I’m staying at home.”

***

Hearing things isn’t such an unusual experience, really. Between five and 13 percent of adults will have an ‘auditory verbal hallucination’ at some stage in their lives.

But despite this, voice hearers—who most often receive a diagnosis of schizophrenia—still live at the sharp end of New Zealand’s mental health sector. While conditions like depression and anxiety are the subject of extensive ‘talk about it’ campaigns, relatable internet cartoons, and first-person essays, those experiencing the less palatable symptoms of mental illness are still often alienated.

In 2015, the NZ Health Promotion Agency surveyed a representative sample of 2500 New Zealanders about their attitudes toward mental illness, especially those who hear voices. Asked about a scenario of a young man who heard voices joining their local sports club, only 51 percent were comfortable with socialising with him, and less than half - just 41 percent would be comfortable having him for a meal. When given a hiring scenario, nearly one-third, or 29 percent of respondents agreed they’d hire the less experienced candidate with no experience of mental illness instead of a more experienced candidate who had experienced mental illness. 46 percent said they would be uncomfortable with a mental health centre opening next door to them.

On top of the stigma, treatment for schizophrenia, the diagnosis most commonly associated with voice-hearing, carries its own set of difficulties. Those who have schizophrenia on average die around 15 years earlier than those without the disease—an early mortality attributed partly to high rates of heart disease, a possible side-effect from antipsychotic drugs. Those with a schizophrenia diagnosis are 2.5 times more to likely die a premature death, even when deaths by suicide - another health risk for those with the condition—are accounted for. This year data was released to show 13 New Zealand deaths from ‘slow-gut’—bowel obstructions as a side effect of Clozapine, one of the most-commonly prescribed treatments for schizophrenia.

But despite the risks, and the challenges, and the stigma, an increasing number of New Zealanders living with voices are sharing their experiences, taking back some control of their treatment from the medical system, and reclaiming the labels that were once used to stigmatise and dismiss them.

It’s Thursday night at Biddy Mulligan’s Irish Pub. The front bar is quiet, almost empty, bar a few locals who have taken over a booth down the back. They look up briefly at the doors to the back bar. The stained glass panels are shaking with bass thump. Someone is sound-checking a distorted guitar. Through the doors, the noise is ear-splitting, the place is crowded. MAD PRIDE, MAD TO THE MAX, one poster proclaims. “A celebration of mental health recovery, post-apocalyptic party fun,” says another.

Around 100 people are here tonight, for a party put on by Mad Pride Aotearoa. The Mad Pride movement started in Canada, a kickback at community prejudice when people with history in the psychiatric system moved into the boarding houses around Toronto and Ontario. They aimed to reclaim terms like “nutter” and “mad” from the tabloid newspaper headlines, and make them their own. The old crowds used to hold bed runs, where they’d push hospital gurneys through cities to raise awareness about the lack of choices in psychiatric treatment.

Arana Pearson, Mad Pride NZ original.

Arana Pearson has been here from the beginning. One of the originals who started Mad Pride in New Zealand around a decade ago, he has a shock of white hair, and a broad, trouble-maker’s grin.

“I think madness is an authentic human experience,” he says, leaning back into an armchair in the pub’s smoking courtyard. “People have been going mad since day one. Anyone who’s got a mind knows that it could malfunction at some time. We just hope it’s not me.”
He chuckles gently.

“The thing is, it was me.”

Pearson’s first voice wasn’t a voice, as such. It started as a gentle, insistent scratching. He reaches over and runs his fingernails gently across the table to demonstrate.

“What is it? Maybe it’s a cat scratching at the door or it’s a possum in the ceiling. Could be a branch scraping on the glass.”
Imagine, he says, if you’d heard the sound, but his fingers weren’t there at the table, making it.
When it happened to him, he decided there were rats in the walls. He heard them often, in different places. The sound followed him around. One time, he was talking to a psychologist who asked, “So what do the rats say?”

“I said, they don’t say anything, they’re rats!” He laughs. “Like, you must be mad, thinking these things talk. It’s not Mickey Mouse.”

But even if they weren’t talking, the rats won’t be quiet. Eventually Pearson started drinking, to try and shut them up. For a time, it worked.

“But after a while of that you end up with two problems,” he says. “A drinking problem as well as a rat problem.”

The more he attempted to ignore them, the more the voices built up. The rats were especially persistent. “At the height of all that stuff for some reason I couldn’t get them out of my head and I decided they were in my head, eating my brains. I looked at my arm one day and it burst with rat fur, it was terrifying.”

After some time hospitalised, and getting professional help, Arana eventually learned to cope with what he was hearing and seeing. Some of it was a matter of reframing the voices, of listening to them, seeing them as guests who were persistent for a reason: possibly with important matters to raise. He now has eight voices, and the conversation is ongoing. Several are negative. They say awful things, terrifying things, things he doesn’t want to repeat on tape. But others are friendly, gentler companions.

“One’s a mate of mine that died when I was a teenager. He was in my rock and roll band, wanted to be a rock and roll singer. We were in a band but he got cancer and died. Then blow me down, later on, after all these distressing voices, he starts talking to me in a quiet voice. He was a very positive voice; it wasn’t a negative. Some of the others were terrifying.”

Arana Pearson talks to Mad Pride punters. IMAGE: Tess McClure

Today, he and his voices simply co-exist. “They don’t go away, but they don’t impact me the same today. We’ve got an understanding,” he says. “Part of it was me working things out and changing some meanings. Part of it was me actually engaging with the voices and talking about them. Once I started doing that it helped.”

The silence surrounding voices is the worst thing, he says. “We teach people don’t talk about voices, don’t talk about that rubbish,” he says. “You end up with people with these really lonely internal experiences that aren’t shared and a behaviour modification programme: look better, do better, don’t annoy us when you’re mentally ill.”

Mad Pride does the opposite. “I really like the idea of reclaiming the word mad. It has been used over the years to put us down, to marginalise people, to minimise our experiences.”

Tonight, he says, “instead of it being a put down, a discriminated label, we’re elevating it. We’re changing its meaning to something to celebrate.”

Artist Ana Jakeman at her home in Whangerei

Ana Jakeman points to a small face on the family photo wall. “That’s me there,” she says.

“That’s me with a mullet.” And there: she points to a small, grinning face, about six years old pulling cross-eyes.

“That’s me there.”

Ana has heard voices since she was a small child—some of her first memories are of seeing or hearing things that weren’t there. Maybe the child in the picture was already hearing and seeing things when it was taken. Back then, her voices were gentle, ephemeral, comforting.

She puts out a plate of Oreo biscuits and makes cups of tea. Her voices are now a constant presence in her life. They’re talking to her now, she says, sharing about the journalist who has come to visit.

“They’re saying, she seems all right, she speaks a little bit of te reo. She’s got a nice colour.”
A colour?
“You’ve got a nice light blue colour.”
As well as hearing voices, Ana has frequent visions—colours, floating lights, large birds and creatures.

Later, as I focus the camera to shoot her portrait, she startles slightly, distracted.

“Oh you’ve just changed from blue, to having these amber sparks around you,” she murmurs. “Lovely.”

The first time she told someone about what she was hearing and seeing, Ana was 11 years old. She told a school-friend, she remembers, and the girl just looked at her. “She just gave me the look like—are you for real? Are you all there? Are you serious? That sort of thing. Then she sort of distanced herself away from me and then started talking behind my back about me.”

She didn’t have a language for it then, but it was her first experience of the stigma surrounding mental health, and from then on she vowed not to tell others. “I realised, okay this is what I’m gonna get. Shut your mouth, don’t say nothing, act like it’s not even happening. Don’t share, don’t tell anybody.”

As she got older, her voices stuck around, and not all stayed positive, she says. She also has a group of negative voices that emerged as she introduced her mind to more adult concepts—sex, drugs, rock n roll, an abusive relationship. “I call them the mob,” she says. “Because either they come in a mob and mob me and literally bring me down, or they sneak up and surprise attack me out of the blue.” She laughs.

“In the past, they had taken me a really, really dark place where I ran to a psychiatric ward, I’d run to respite care, residential care, anywhere I could try and help, get some help to get them away from me.”

“But I don’t allow them to do that now.”

Ana was institutionalised for the first time after the birth of her daughter. She was experiencing extreme sleep deprivation, had a psychotic episode, and was hospitalised. It was the first time she’d told anyone about her voices since she was a child. She was diagnosed as bipolar schizo-affective.

But since then, she’s learned not just to live with her voices, but to thrive. An accomplished painter, sculptor and art teacher, she’s now managing her symptoms happily, with a mixture of medication, psychiatric system help, art therapy, and embracing her Te Ao Māori heritage.

Ana uses art to help manage her symptoms. IMAGE: Tess McClure

“I found out that you can take as much medication as you like, you can go to as many rehabilitation places and psychiatric wards, at the end of the day it would be up to me to tame those things and control them,” she says.

While she’s learned to tame the mob, there are other, positive voices, who she enjoys, and wants to stay. They’re the opposite to the Mob: warm, gentle, familial, and truthful. It’s hard to articulate what it’s like hearing from them, she says—it’s not so much that they speak, as they share with her.

***

At Mad Pride in Hamilton, the show is heating up. A group are singing an adapted version of Jackson Five’s ABC to uproarious laughter.
“It’s easy as ECT [electro-convulsive therapy]
Simple as DHB [District Health Board]
DBT [dialectical behavioural therapy], baby ECT now”

Arana Pearson is moving through the crowd, stopping to have a quiet chat with whoever’s having a smoko. Over time, he’s gone from patient to provider: he works with an iwi health provider out in Opotiki, and he’s driven a crew from there all the way to Hamilton for the concert. One of them is Steven, a gentle-faced, softly-spoken man dressed all in navy blue.

Steven uses poetry to communicate with others about his experiences. IMAGE: Tess McClure

Steve hears voices too. “It's hard to see who's talking, when they're talking and someone else is talking and it's pretty hard. Sometimes when they're talking I answer them and someone goes, ‘Who're you talking to bro?’” He laughs.

When he first started hearing voices, people didn’t want to know about it, and it was pretty hard to explain anyway, he says. Now he writes poetry to talk about it.
Steve unfurls a small piece of paper, crumpled from the centre pocket of his parka. He smooths it, stands straight-backed and reads:

I saw things that were freaky before the voices started their games,
Legacy of winds, heard with drifting voices surrounding from all angles, to deafening inside their head when hands are over ears and they had no names.
Nearly going totally insane in hearing so many at one time.
Then all of sudden a big shut up and they were gone.
Still today it's hard to be normal with echoed voices.

“I found it quite hard talking to people about it, because they would’ve thought I was lost, so I would write it in a poem where they would listen and they go 'oh is that what you were talking about!' He gives another small laugh.

“Yeah, everyone gets to listen when it's in poetry but when it’s ordinary talk, they don't wanna know. Unless it's written down.”

Steven performs at Mad Pride. IMAGE: Tess McClure


This is the case for many in the Mad Pride movement: over the years they’ve turned to the arts as a means to express ideas and experiences that might not come across well when you just flat-out say it.

For Ana, her work as a painter and sculptor have been key to her recovery. Today, she has her canvas set up in the living room, and a woman’s face is slowly emerging.
“Using art as a therapeutic way to deal with my mental health issues has been awesomeness,” she says. “It’s the only way I can describe it. Being able to express myself through arts and craft have helped me understand what I’ve been through and what I’m going through.”

She lays out her larger canvases, entitled Nga Whakawhitinga. It’s the Māori term for schizophrenia, roughly translated to mean standing at the crossroads.
“I like this Māori term better,” she says. “Because it’s about choices. I’ve got control. I have choices.”

Ana's mother, Maria Jakeman. IMAGE: Tess McClure

Ana’s mum, Maria, has seen her through the lows of her illness, but has also taught her the special value that voices can have in Māoridom.
Maria teaches her prayers which comfort her and keep ugly voices at bay. She is tiny with age, and sits with Ana at the small kitchen table, whispering a karakia, curtains drawn against the hot Whangarei sun.
“Matakite. That’s what we call it. When you hear things.”
Her voice is low and rough and she creases into a broad grin.
“Sometimes it’s a blessing, sometimes a warning.”

Maria Jakeman teaches Ana karakia to help her manage her voices. IMAGE: Tess McClure

Rediscovering te reo, and Māori understandings of voices through her mother has also been key, Ana says.

But more than any label, or term, she wants to reclaim her own identity. “I am who I am and I’ll claim that I am me,” she laughs. “I want to reclaim that because before I wasn’t who I was, you know. I was a shadow of who I was and now I prefer to claim my own identity, not words that describe my identity. It does not define me.”

***

Ultimately, the conversation needs to change, Arana says. It’s time to move past just attempting to reduce stigma, and start actually embracing the experiences of people with different mental health conditions.

“Let’s find out the value of this experience and let’s have this identity that includes this part of me, don’t keep it aside. It’s not an illness, it’s not something to be ashamed of,” he says.

Steven writes a poem to perform at Mad Pride. IMAGE: Tess McClure

“I think the strength is being able to tell the stories and having those heard, not necessarily the voices perhaps, but those stories of experience be heard.

“The experiences are rough, they’re real, they’re raw, but they’re instructive.”

It’s about saying: “I might be mad but I’m not stupid. The thing is I’m not believed often, just because I’ve been diagnosed. People dismiss my own experiences and so tonight at Mad Pride, we’re reclaiming our humanness.”

This series was made with help from Like Minds Like Mine and the Mental Health Foundation.

Need to talk?
Free call or text 1737 any time for support from a trained counsellor
Lifeline – 0800 543 354 or (09) 5222 999 within Auckland
Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
Healthline – 0800 611 116
Samaritans – 0800 726 666

*Names of Hearing Voices network members have been changed to protect anonymity

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