Stalking the Madness that Stalks Us

Patrick Tracey

Patrick Tracey
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Boston, Massachusetts, USA
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April 03
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Only boy to four older sisters, allegedly sane member of one of the sweetest (if saddest) schizophrenic families ever documented, and recently author of the just-published Stalking Irish Madness: Searching for the Roots of My Family's Schizophrenia (Bantam Dell), which was named to the Indie Next list, and just picked by Slate magazine as "a best book of 2008." More info at stalkingirishmadness.com

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FEBRUARY 19, 2009 2:08PM

Kid Too Scared to Tell

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Only a robot would not gulp at the frightened angel who appeared online: “I have heard ‘voices’ my whole life,” Alexandra pleads. “I am twelve, so yes, I am still a child. When I was really little, I used to talk to them but I have grown out of that. Instead of the voices fading away, they have gotten louder. It's like being in an airport in my head! I have been too scared to tell anyone until recently. I haven't tried to make them out. If anyone has any tips, I'd love them!”

Swiftly came the reply from Paul Baker, a man who hears voices himself and runs the Intervoice self-help site for those who suffer from auditory, or verbal, hallucinations.  He bounced the kid over to the section on children and voices. “Lots of people have told us that their voices get louder when they try to ignore them, so this is not unusual,” he reassured her. “The good news is that for most people of your age, the voices do go away after a while and there is help available too. I have passed on your message to someone who has done a lot of work with people of your age who hear voices. Hopefully she will be able to say something more."

My heart aches for Alexandra, but I'm so glad she found this site.  Reading between the lines, I suspect the adult world has scolded her, insisting her voices are "nothing."  That must be the last thing to say to a kid in the clutches of hallucinations.  How sad that a child like this should spend her 12 small years on the sharp end of "it's nothing."

When a child is  terrorized by voices—a hallucinatory nightmare more common than most would care to admit—then she  suffers in silence.  Were she driven delusional by the experience, which is like having five radios in your head, all blaring at once--an experience that would drive any of us around the bend--then society might dub her a “schizo” and forget her forever, a life gone before it is possessed.  This is a human rights tragedy on a vast scale, vastly ignored.

Baker’s response is the exception that proves the rule. For the longest time, it was deemed irresponsible, even dangerous, to engage the voices.  Now, led by the hearing voices movement, with a strong assist from the online community, the ground has shifted beneath psychiatry’s feet.

Not that psychiatry has ever denied the experience--it has not quite known how to handle it. Going back to Socrates, history is replete with examples of those who’ve heard disembodied voices, as opposed to the voices that we all hear, the first-person voices of the superego.

Until a millennium ago, this non-ordinary state of consciousness might have elevated your social position. In tribal societies it still accords shaman status. But today most of the “schizo” voice hearers are passed unnoticed, mumbling to invisible head friends, sleeping on heating grates, poking through rubbish bins for the meager rotten winter meal.

This is the sorry state for too many of America’s 2.4 million people diagnosed with schizophrenia—shunned and shamed and given wide berth by the rest of us. Alexandra was on her way to joining their ranks, a lifetime wandering the urban wilderness, or, worse maybe, slouched in the dark corners of some drab, lifeless institutional setting. This was her certain lot when an online lifeline pulled her back.

While supportive psychiatry once seemed to end, as a practical matter, at the far side of clinical depression, more shrinks these days are encouraging their schizophrenic clients to “dialogue” with their voices.  The therapeutic technique has been ignored in the past, I suspect, because the phenomenon is beyond the ability of most psychiatrists to understand or to know.

You can't blame them for that. Yet voice hearers, together, know, and that’s why they are finding comfort together in meetings of the Hearing Voices Network, found through the Intervoice online clearinghouse. The appetite for answers, says Baker, is voracious, and they'd all much rather be known as voice hearers than schizophrenics. The label itself is disabling.

All but the most hidebound psychiatrist are now content more or less as  sideline observers at these meetings. As part of the new psycho-social-spiritual medical model for recovery, psychotropic meds are being augmented and in some cases replaced by meetings.

Setting aside a place where voice hearers can speak to each other without judgment is the lynchpin of their daily recovery. Of course, there’s a big difference between communicating with others online and meeting in person to share experience, strength, hope and practical coping tips in the flesh. It knits trust and promotes fellowship, a kinship born of common suffering and mutual healing.

Voice hearers--getting to know each other in small meetings sprinkled throughout Europe and, in the last two years,  America too finally--are taking their cues from the substance abuse recovery movement.  Their "recovery" not their “cure” is the new watchword.

Back online there’s a Jason who has joined  Alexandra’s Intervoice thread. Jason says he hears two little old ladies gossiping incessantly to each other.  “When I try and concentrate and listen to what they have to say, they know I am listening and tend to "SHHHHH!!!" and stop talking. To me, this implies that they are talking about me, but of what and why, I have no idea.”

Ron, a middle aged man, has voices that claim to be dead relatives.  “At other times they just gather around while I play games on my computer and have chosen teams to see if they can win.”

A woman named Holly says she tries not to let her voices get her down. “Sometimes I feel very angry about it because it makes me different than everyone else. Feeling like I have to ‘pretend’ I don't have a problem in the world makes my voices very angry.”

The new open-mindedness is encouraging. It’s also nice to see more professionals pushing more clients toward meetings, reaching less reflexively for the prescription pad.  

 A condition dubbed by the World Health Organization as the world’s fourth most disabling needs desperately to come out of the closet.  Beyond America's 2.4 million schizophrenics, there’s tens of millions who hear voices intermittently and never develop full blown psychosis.  They need to come out of the closet too.

If verbal hallucination is  no longer a step beyond psychiatry’s comfort zone, then it’s likely to remain the twilight zone for most ordinary folks. They have no clue that this highly developed world of voices is out there.

Dr. Phil or Oprah Winfrey have no time for it yet, but they will.  The movement is too ripe, the need too great, for voice hearers to be put in the corner forever. There is a place for them around our national campfire. Someday we might even see a 5K Run for Schizophrenia. Until then, it's a relief to know that one hurting kid has been caught in time.  I wish her well on her journey. May she have a lovely, lifelong recovery.

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This is stunning. I had no idea about this variant of hearing voices among people who evidently are not considere schizophrenic (?). Has Oliver Sacks written about it?

I had an auditory hallucination just once, and I asked around and found it's not all that rare to hear a disembodied voice now and then. But you describe another level entirely.
Yes, the experience is widely prevalent and more widely dismissed by those who don't know it. It does not surprise me that you are a sensate. About ten percent of us report having an experience such as the one you describe. For most the voices are heard only for a short while and never again. Others, known as schizophrenics, have a much more highly developed voice life that never ends.

Sacks tends to specialize in much rarer syndromes, other non-ordinary states of consciousness. I'm sure he'd agree that to say that something is unheard is only to say that it falls within the part of the part of the sound spectrum that is not audible to the human ear. A classic tautology, right? So why do auditory hallucinations register in brain scans as increased activity in the borca region of the brain? We're missing a lot -- just ask the dogs. We think we're so tuned in, but there's much that we miss.

It's well past time to normalize the experience instead of making freaks of kids like 12 year old Alexandra.
Jane, thanks or the comment. I saw your boy has Aspergers, so I know I have a sympathetic ear here. There's much to said for normalizing the experience, bringing it out of the closet. My family is hoping to use my book as a way to help do that. I may head back to Ireland to do a documentary now. I think a lot of complex crap can be explained fairly simply if we bring nonordinary states of mind outta the closet. And I mean that without an ounce of the "grasping pretense" of your average "citiot." Thanks for the laugh. Cheers!
YES to bringing ' nonordinary states of mind outta the closet'. People used to get burnt alive for hearing voices.... in those times, those that didn't fit within the so called 'norms' were physically torn in various little bits etc, these days it has been mentally. Humanity used to wall people up alive as a punishement if they didn't fit the rules of what was acceptable. And what was/is acceptable is allways changing, as the boundaries and understandings of reality change. Yes to bringing everything out of closets, for giving children a safe place to be heard, to dismantle the fear, distrust and limitations of what so called 'reality' is to one person and not to another!

I love the way you write. Lighter fuel to the soul!
I so wish my brother could have availed himself of this opportunity. His disease was cruel, but the social stigma he endured was crueller still.
hahah..bless you Mr No Name No Face New Blog person....loved your posting..... you perfectly demonstrate certain mind sets that would prefer to wall up/crucify/disemember those who maybe different ...

I send you a great deal of love and deep affection... :)

Living with such venom must be painful.
New review of your book posted at http://open.salon.com/blog/james_mccarty_yeager/2009/02/20/too_much_of_nothing
New Blog, your post is brilliant for its bald demonstration of my central argument: that our individual heads are such bad neighborhoods, we should never go in alone. Otherwise it's all angry resentment kick boxing up there. You are not alone. We all recognize your mouth-foaming bile because we've all been there ourselves in our sorrier states of mind. Face it" We've all gotten off on the same little frisson of self righteous anger. No biggie.

I am tempted to start stomping around like a little angry god myself, puffing out my chest and setting the record straight just to fix myself and make myself feel better. It's a fool's errand. I'd only be stepping -- here I go - into the self same trap.

I could vomit back all over you, equally without nuance, and feel all manly about tearing the head off a dog. I could goad you on for bringing a little boy's twig to a big man's stick fight. I'm doing it right now -- dig? -- and it's just brilliant for its bald demonstration of my central argument: Our heads are bad hoods, and all attack on some level is an elaborately disguised call for love. It has taken me a lifetime to learn this lesson and I have to re-learn it everyday.

So before I get my own angry walk on, know this: I've got two treatment resistant "schizophrenic voice hearing" sisters at home to prove you and your whole twisted "GET A FUCKING GRIP" school of life wrong.

I've read Stasz widely. I think we all have. You might want to read my new memoir, Stalking Irish Madness: Searching for the Roots of My Family's Schizophrenia -- stalkingirishmadness.com -- and and then you might begin to understand the utter devastation, the depth of loss that is beyond fathom.

It's a journey from the head to the heart, the only worthy one, mate, and that's got everything to do with keeping my own head well screwed on. What the world sorely needs--as individuals, families, writing communities, country's, planets -- is more peace and and love, less push and shove. I wish you well on your journey.

Patrick
Thank you, Patrick, for writing about this topic. It can be frightening to think that "there are more things in heaven and earth" than are dreamt of or imagined. To think that there might be facets of our lives that are out of our control is not comfortable for most people. It takes inner strength to hear voices and live and function in our reality at the same time.
Apparently there is a spectrum for this, too? According to my information, auditory, visual or tactile hallucinations are possible in various other mental and physical conditions.
It makes a sufferer VERY unlikely to reveal it to a doctor or even therapist, for fear of being called "SCHIZO"

I truly hope that people with schizophrenia get the attention they deserve and it is less stigmatized.

I finally got brave enough to reveal some tactile hallucinations to my therapist. I also had visual ones. The tactile ones were due to a severe kidney infection that was undiagnosed. The auditory ones come and go with severe depressive disorder. It gets confusing!
Thank you so much for writing this.
just wow, new blog, I guess I was wrong about you.
Life is not that simple and we are not all the same. You think salon censors "undesirables" but I think the biggest "powers that be" and censors are in you. You can have different opinions but you have to have respect for others. I hope you are young because you have a long journey ahead of you, hopefully.
Please stay off my blog.
Very good artical. Very insightful and a little worrying that America doesn't seem to recognise auditory hallucinations as of yet??
Schizophrenia is scary. Very scary. I've had my mother's and my life threatened by a schizophrenic before. I was only 14 or so at the time and it was terrifying.
On the other side I also went out with a Schizophrenic, another fairly unpleasant experiance.
The problem is. The are a million and one different types of schizophrenia and its usually something that you're not born with but develope from the lack of mental care! Hearing voice's is one thing but letting it esculate to that level or lack of control is terrifying.
I've had my own experiances with mental health - hypnopomic hallucinations, night terrors and very mild depression- and I know that left untreated or unsupervised things only esculate!
A brilliant read.
Keep it up!
I have been lucky. I have long had something that must distort sounds--like whispering vents--into voices. I have thought, intermittently since childhood, that upon coming into a room I would discover two relatives there were surely talking about me, only to find that they were across the room from each other and oblivious. I didn't get mad. For a long time, I assumed others did this too. Maybe this was just an exaggeration of when you think you hear your phone under music, but don't. There is schizophrenia and bipolar in my family. Some have spent years wandering the country homeless and depleted, (a former star high school and college football player with a jutting, poorly healed broken arm among them). Others have died in institutions, when they were anywhere from 30 to 70s. A close relative shot herself. Not all of these heard voices. I had more significant auditory and some visual hallucinations when I was diagnosed bipolar after my father was murdered. Sometimes someone would be looking dead at me, and I was surely mishearing what they were saying. I mean, it was nuts. These were usually not the most terrifying parts of the illness, so I know others have it much worse. I have never heard a voice tell me to do something violent. If it did, I would ignore it. I certainly can ignore "real"people. :)
PS A brain science prof said they have MRI's people while they were hearing voices. There was something interesting about which part of the brain "lights up" with activity, as opposed to when a "normal" person creates and hears language. I will look it up and write to you.
Hi Patrick, at a conference here in December the theme was that the schizophrenic delusion is an attempt at healing and should be respected as such by the psychiatric profession. I was blown away to hear psychiatrists prepared to listen to the patient! It's always been a cornerstone of Lacanian treatment of psychotic symptoms. Thank you for distinguishing the symptoms - like hearing voices - from the disorders. Unfortunately, the DSM (the almost-universally accepted Diagnostic Manual) diagnoses according to symptomology.
Disturbing and intriguing. I'm eager to read your book.