Short piece by Oliver Sacks from Nov 2012 in the lead up to publication of his book “Hallucinations”.
Seeing things, hearing things, thinking things, feeling things that others don’t is what humans do- we all see, hear feel think in a unique, slightly different way, so we all do it. What’s not “there” about that?
In the language of hallucinations we hear, see something that “isn’t there” – well, just because only one person hears it, that does not mean “it” isn’t “there” – it simply means only one person hears it.
Now, of course, this can be problematic [ Saks says “hallucinations are startling” -they can be but are not always] but it is also an everyday experience, part of being alive, being conscious. Saks offers a number of examples that are either so common that we too have likely experienced it ourselves, or else that are simple enough and similar enough to whatever we do experience that we can imagine how it might be if we did.
The line between perceiving and hallucinating is not as crisp as we like to think. In a sense we are hallucinating all the time. One could almost regard perception as the act of choosing the hallucination that best fits the incoming data.”
Is automatic thinking the hallucination that best fits the data?
That’s to say nothing of a whole bunch of neurological and physiological conditions that can be tested for that can include hearing voices and that “mimic psychosis” whatever that is. These including taking medications, especially taking multiple mediations – indeed at least one differential diagnosis tool for ruling out causes of “auditory hallucinations” lists “commencing psychiatric medications”. True nuff.
It’s life Jim, but not as we know it
Again, that says nothing of the many life situations we can, and likely will, find ourselves in that can give rise to finding ourselves hearing a voice that we might find comforting, guiding, helpful – research showed almost 50% of people in long term marriage will hear, see, otherwise sense their spouse after death.
In some cultures voices, visions and other unusual experiences – they might be called spirits, ancestors, guides – are regarded as gifts, be revered and people who experience them might be helped to learn how to handle the experience, not simply for their own benefit but because the community as a whole values the insights that can come from those experiences.
How did we become so scared of our own experiences?
So, how did western culture become so afraid of the voices that only some of us hear?
How did we adopt the automatic thinking that if a person hears a voice then they must be going crazy, that they must be labelled with that most terrifying, disabling and de-humanising and life-stealing of all diagnoses schitzophrenia?
Research shows pretty solidly that…
- 10% or more of us hear voices on a regular basis
about 700,000,000 people hear voices on a regular basis
- 70% or more of us might hear a voice at some time eg at key life event, like death of a loved one
about 5 billion people will have some form of “voice- hearing” experience at least once
- 65% of Spanish Medical students reported hearing something that “wasn’t there”
Mama, We’re all Kraazy now
So, in the automatic thinking we’ve all been trained in that means that one billion of us “must have schizophrenia”, five billion of us likely do, and that 50% of married people and 65% of Spanish Doctors are certainly are at very high risk of diagnosis.
Clearly, this is preposterous – it’s medical diagnosis as dumber than Dumb and Dumber.
Seriously Doc, is that all you got?
Yet, we persist with this false belief that if it presented before a clinician in someone who already had been given a diagnosis, would be called “delusion”.
- Q. How did we make it so hard in our society for people to talk about something that about a billion of us do experience regularly?
- Q. Why do we make it so difficult to talk about something that 5billion people will experience at some point in our lives?
People don’t talk about this – well, would you?
The reason we don’t hear people talking about the full range of experiences is that we’ve made it so difficult to talk about it.
We don’t even talk about it with our doc, or other workers – because we’ve learned not to trust that they can understand. Moreover we can’t trust that if we talk to docs about these experiences then the training, indoctrination, discrimination and automatic thinking it breeds will click into play and we will find ourselves on a route that all too often leads to life-limiting treatment, exclusion, discrimination, poverty, violence and early death.
We have created a culture in which we fear our own selves.
- How did we create a society in which we have such fear of ourselves?
- How did we create a society so afraid of something that one billion experience pretty much every day and that five billion will experience in some form, at some point?
Experiences like voices and visions and strange thought are so common that we ought to all be able to talk about, and with almost anyone.
Yet, the biggest problem that people who hear voices [or have other experiences] deal with is that there is no one they can talk with about it.
This leaves people left alone, isolated and without clues to deal with.
And this is something that a billion people experience every day and something that 5 billion people will experience at some point, its not difficult to conceive of how there could be a huge library of information and shared knowledge that people can access easily.
Instead we isolate and demonise people, and make it as difficult as we possibly can for them to deal with, learn about and live with what they experience.
Well, I don’t no about you but really I’m not okay with that.
Somebody to trust
As Sacks says, his patients do talk to him about experiences like voices, visions – because they trust him- not necessarily to have an answer, though that’s a big part but they trust him to listen, to not jump to conclusions and not to automatically assume that he knows what it means, and what he must do to stamp it out and by whatever means necessary.
Often of course, he’s able to sleuth, from all the possibilities, that there is an underlying medical condition at play – and it is not unknown for voices or visions to help people identify that they have a problem needing medical attention, mostly they talk to him because he can help them put the experience into perspective, help them figure it out, help them heal, make sense of, and find the good in the experience.
I find it interesting that Sack’s approach as a clinician: regarding voices, visions and other experiences his patients trust him enough to talk about as part of a complex puzzle, as clues, as benign, maybe even beneficial and comforting, so much so that that patients learn to regard them that way too… And if you have the money to pay then you can likely find people who will work with you that way. Many approaches do work in similar way- it is how we do things in hearing voices, for instance.
Sadly, its very different from what many people experience but really, it might be all we need do for each other, and it is always the best place to start.
Seeing Things? Hearing Things? Many of Us Do
By OLIVER SACKS
NYTimes, Published: November 3, 2012
Hallucinations are very startling and frightening: you suddenly see, or hear or smell something — something that is not there. Your immediate, bewildered feeling is, what is going on? Where is this coming from? The hallucination is convincingly real, produced by the same neural pathways as actual perception, and yet no one else seems to see it. And then you are forced to the conclusion that something — something unprecedented — is happening in your own brain or mind. Are you going insane, getting dementia, having a stroke?
In other cultures, hallucinations have been regarded as gifts from the gods or the Muses, but in modern times they seem to carry an ominous significance in the public (and also the medical) mind, as portents of severe mental or neurological disorders.
Having hallucinations is a fearful secret for many people — millions of people — never to be mentioned, hardly to be acknowledged to oneself, and yet far from uncommon. The vast majority are benign — and, indeed, in many circumstances, perfectly normal. Most of us have experienced them from time to time, during a fever or with the sensory monotony of a desert or empty road, or sometimes, seemingly, out of the blue.
Many of us, as we lie in bed with closed eyes, awaiting sleep, have so-called hypnagogic hallucinations — geometric patterns, or faces, sometimes landscapes. Such patterns or scenes may be almost too faint to notice, or they may be very elaborate, brilliantly colored and rapidly changing — people used to compare them to slide shows.
At the other end of sleep are hypnopompic hallucinations, seen with open eyes, upon first waking. These may be ordinary (an intensification of color perhaps, or someone calling your name) or terrifying (especially if combined with sleep paralysis) — a vast spider, a pterodactyl above the bed, poised to strike.
Hallucinations (of sight, sound, smell or other sensations) can be associated with migraine or seizures, with fever or delirium. In chronic disease hospitals, nursing homes, and I.C.U.’s, hallucinations are often a result of too many medications and interactions between them, compounded by illness, anxiety and unfamiliar surroundings.
But hallucinations can have a positive and comforting role, too — this is especially true with bereavement hallucinations, seeing the face or hearing the voice of one’s deceased spouse, siblings, parents or child — and may play an important part in the mourning process. Such bereavement hallucinations frequently occur in the first year or two of bereavement, when they are most “needed.”
Working in old-age homes for many years, I have been struck by how many elderly people with impaired hearing are prone to auditory and, even more commonly, musical hallucinations — involuntary music in their minds that seems so real that at first they may think it is a neighbor’s stereo.
People with impaired sight, similarly, may start to have strange, visual hallucinations, sometimes just of patterns but often more elaborate visions of complex scenes or ranks of people in exotic dress. Perhaps 20 percent of those losing their vision or hearing may have such hallucinations.
I was called in to see one patient, Rosalie, a blind lady in her 90s, when she started to have visual hallucinations; the staff psychiatrist was also summoned. Rosalie was concerned that she might be having a stroke or getting Alzheimer’s or reacting to some medication. But I was able to reassure her that nothing was amiss neurologically. I explained to her that if the visual parts of the brain are deprived of actual input, they are hungry for stimulation and may concoct images of their own. Rosalie was greatly relieved by this, and delighted to know that there was even a name for her condition: Charles Bonnet syndrome. “Tell the nurses,” she said, drawing herself up in her chair, “that I have Charles Bonnet syndrome!”
Rosalie asked me how many people had C.B.S., and I told her hundreds of thousands, perhaps, in the United States alone. I told her that many people were afraid to mention their hallucinations. I described a recent study of elderly blind patients in the Netherlands which found that only a quarter of people with C.B.S. mentioned it to their doctors — the others were too afraid or too ashamed. It is only when physicians gently inquire (often avoiding the word “hallucination”) that people feel free to admit seeing things that are not there — despite their blindness.
Rosalie was indignant at this, and said, “You must write about it — tell my story!” I do tell her story, at length, in my book on hallucinations, along with the stories of many others. Most of these people have been reluctant to admit to their hallucinations. Often, when they do, they are misdiagnosed or undiagnosed — told that it’s nothing, or that their condition has no explanation.
Misdiagnosis is especially common if people admit to “hearing voices.” In a famous 1973 study by the Stanford psychologist David Rosenhan, eight “pseudopatients” presented themselves at various hospitals across the country, saying that they “heard voices.” All behaved normally otherwise, but were nonetheless determined to be (and treated as) schizophrenic (apart from one, who was given the diagnosis of “manic-depressive psychosis”). In this and follow-up studies, Professor Rosenhan demonstrated convincingly that auditory hallucinations and schizophrenia were synonymous in the medical mind.
WHILE many people with schizophrenia do hear voices at certain times in their lives, the inverse is not true: most people who hear voices (as much as 10 percent of the population) are not mentally ill. For them, hearing voices is a normal mode of experience.
My patients tell me about their hallucinations because I am open to hearing about them, because they know me and trust that I can usually run down the cause of their hallucinations. For the most part, these experiences are unthreatening and, once accommodated, even mildly diverting.
David Stewart, a Charles Bonnet syndrome patient with whom I corresponded, writes of his hallucinations as being “altogether friendly,” and imagines his eyes saying: “Sorry to have let you down. We recognize that blindness is no fun, so we’ve organized this small syndrome, a sort of coda to your sighted life. It’s not much, but it’s the best we can manage.”
Mr. Stewart has been able to take his hallucinations in good humor, since he knows they are not a sign of mental decline or madness. For too many patients, though, the shame, the secrecy, the stigma, persists.
Oliver Sacks is a professor of neurology at the N.Y.U. School of Medicine and the author, most recently, of the forthcoming book “Hallucinations.”