Posts tagged schizophrenia
Posts tagged schizophrenia
Modern “civilized” cultures do not have a good relationship with the wild. It seems we are always doing everything possible to shut it out of our lives, or to kill or tame it to the point where it is unrecognizable. Yet that which is wild is always still lurking, somewhere over the edge of our boundaries and frontiers, and also inside people, both inside the “others” we might approach warily on the street, and even inside our family members and ourselves.
Another name for the Wild is Mystery, or the Unknown. We like to pretend that the Unknown is just a small affair of no great importance, but we are shadowed by a sense that the Unknown or Mystery totally dwarfs and makes a mockery of everything we think we know. So we commonly act as quickly as we can to suppress that sense, to find whatever allows us to go back to thinking we know what we are doing.
And yet, as much as we try to suppress the Wild, we totally need it. Sometimes we need it just as a location where we might find some missing ingredient that our tame world needs to function, and sometimes we need it when the contradictions in our “normal” world become too oppressive and we need to immerse ourselves, at least for a while, in something much vaster.
I am intrigued by the relationship between the experiences we call psychosis and wildness in general. That’s why I especially enjoyed recently reading a book titled “Into the Thicket” by William Brundage, which tells his story of getting lost simultaneously in the wilder areas that existed near his home in Eugene Oregon, and getting lost in the wilds of his own mind.
“Madness” is often associated with one’s mind falling apart, but Will’s story is unique in that he recalls a specific time and place where he had an experience of his mind shattering. It might be best to let him tell the story himself:
“At this point, gasping, I realized that something was going horribly wrong. Futilely I attempted to rein in my mind, but I had no way of doing so. How does one grasp a thought and force it to return, especially when it is flying high and away? Then, there was a moment that I would never wish on anyone – I felt the cracks appear. First one, then hundreds, of small shards broke free from my consciousness. Within a minute, life had spun out of control. Alone with the beating of my heart, I was fighting for survival. The finale came only a minute later. With a thunderous crack, my mind blew into dust and spread over the city like snow. I could feel the reverberations in my ears, but the world was silent.
“As the cataclysm subsided, I looked around myself as if for the first time. Every tree sparkled with dew. The grass shown green like the hills of heaven. The wood smoke smelled like myrrh. Reaching out, I touched the trees around me, and felt my hand touch bark for the first time. There was no thought or feeling, just a realization that I was watching myself be born again. When I looked onto the city, I saw with new eyes the world that I thought I had known. I was no longer myself: my mind was scattered to the wind like chaff. It was sunset when I set my feet along the downward path to Eugene. I had been transfixed for an entire day, staring in mindless rapture at the city I had grown up in.”
For Will, this “wild” experience was just a beginning, a sense that if he could only turn himself over fully to something that waited for him in the wild areas near his home, everything would become right or better in some very important way. This journey required courage, and he found himself increasingly able to face the dangers he encountered without regard to his personal welfare. (Unfortunately, he lacked an adviser such as the friend I had in my late teens who was fond of repeating the quote “discretion is the better part of valor.”) His adventures became increasingly chaotic, till he found himself facing a frosty evening, naked, alone, and deeply cut up by brambles. He had made such a point of not giving in to any fears, but now he found himself abandoning his quest to humbly seek help at the home of a family that ever so symbolically happened to be named “Craven.”
Will speculates in the book on how different the rest of his experience may have been had a mental health system existed that understood the relationship between his personal quest and things like shamanic traditions, a health system that knew how to assist him in continuing his explorations using more sustainable methods. Instead he ended up in a hospital, labeled and drugged.
The rest of the story is about his battle to regain control of his life from that point on, trying to find a balance between the excesses of the mystical wild “Faerie” world that still called to him and the sometimes helpful but often overly repressive world of “modern” mental health treatment. He worked on his own to draw from diverse spiritual traditions to assist his recovery, and from them became inspired to try speaking in a friendly way with his voices, which he describes at first as being like “talking to a drunken man with a gun.”
Eventually though the practice of being friendly toward disturbing parts of his mind paid off, and Will was able to find enough mental calm that he was able to substantially reduce his medication, and to do things like attend school, go to work, including doing some peer support work, and start a family. While he has at least not yet fully left behind the mental health system definition of his experience as “schizophrenia” and he still takes some medication, he has definitely found a valued and enjoyable life for himself at this point.
In a way, such success itself leads to a dilemma for people like Will. Should he try getting off medication completely, even though that might lead to some “wild” mental states that could possibly threaten everything he has managed to achieve in his life? And, to what extent should he allow himself to follow the wild impulses that got him into trouble in the first place?
Toward the end of his book he tells a story about doing some exploring in Scotland, accompanied by his wife, and encountering a wild area that seemed to be seducing him into once again wandering away from the world, from other people including his wife, and from anything coherent in his mind. He reported that his wife sensed something was amiss, and called him back, and he left the area happy he had resisted its call. I found myself wishing he had been able to heed its call, but in a limited way, that he had been able to perhaps draw his wife into wandering into that strange wild realm but without total abandon, instead bringing just enough discretion, just enough wariness, that he and his wife would likely not have come to harm, but might have had an amazing experience beyond the limits of the “normal.”
In the end, the wild is essential to us, but remains threatening as well. I think we do best when we can acknowledge both sides of this complex truth, and see what emerges from that. This means not denying any role for fear (as Will did in his early explorations) but also not giving fear too prominent a role, not letting it be stifling. With work on finding the right balance and dialogue, I hope our society can come into a much healthier relationship with madness, with mystery, and with all forms of wild things.
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[Kickstarter Project] William Kurelek’s The Maze (& bonus film - Out of the Maze)
by Nick Young & Zack Young
The Maze – William Kurelek’s painting of the inside of his skull - is the centerpiece of two films on the celebrated Canadian artist.
Directors’ description of the project:
Hi, we’re filmmakers Nick Young and Zack Young, and we’re trying to raise money to finish and release William Kurelek’s The Maze, a film our father started over 40 years ago. Our necessary steps for completing the project are detailed below (see Need for Funding), but one of them is producing the bonus film Out of the Maze, which will be included on the DVD and Blu-ray.
William Kurelek has become one of Canada’s most celebrated artists. His work is on permanent display in major galleries and museums around the world. When he was hospitalized in London, he was diagnosed as schizophrenic, but he believed he was suffering a spiritual crisis.
Our father, award-winning filmmaker Robert M. Young (Nothing But a Man, Alambrista!, Dominick and Eugene), began this film because he believed that Kurelek’s revelations in both his art and in his person were of great importance. Our goal is to complete the final stages of this film, which includes finishing a new bonus film.
"The Maze is a painting of the inside of my skull, which I painted when I was in England as a patient in Maudsley and Netherne psychiatric hospitals. It is a story of my life, well in the sense that people tell stories by the fireplace to entertain their guests, trying to make them accept you. In this case I wanted to be accepted, as an interesting specimen."
- William Kurelek, 1969.
In 1969, our dad was approached by Professor James Maas of Cornell University to make a film about psychotic art, in order to depict the relationship between art and psychology. One of the paintings in Maas’ collection was William Kurelek’s 1953 work The Maze; Young and Maas together decided that the best film they could make would be about the man who painted this masterpiece.
Partnered with filmmaker David Grubin, our dad travelled to London to document the hospital where Kurelek had been a patient, and to interview his doctor, therapist, and nurse. Eventually, our dad and Grubin made it to Canada, where they interviewed the Kurelek family, his priest, and the artist himself, whose on-camera revelations “feel like a gift” (Erin O’Neal, exclaim.ca)
William Kurelek trusted the two filmmakers enough to be candid about his story, even about his attempted suicide and self-professed “spiritual crisis.” He allowed them into his home and his world, and even painted the experience in his work I am Proud of My Humility (shown above in “Rewards” - archival print available). The film went on to win several awards, but only as a half-hour educational piece for psychology classrooms. The footage for a longer, more complete version of the film was lost for over 40 years.
For more mental health news, Click Here to access the Serious Mental Illness Blog
[In the News] The Violence in Our Heads
By T. M. Luhrmann
Stanford, California. — The specter of violence caused by mental illness keeps raising its head. The Newtown, Conn., school killer may have suffered from the tormenting voices characteristic of schizophrenia; it’s possible that he killed his mother after she was spooked by his strange behavior and tried to institutionalize him. We now know that Aaron Alexis, who killed 12 people at the Washington Navy Yard on Monday, heard voices; many observers assume that he, too, struggled with schizophrenia.
To be clear: a vast majority of people with schizophrenia — a disease we popularly associate with violence — never commit violent acts. They are far more likely to be the victims of violence than perpetrators of it. But research shows us that the risk of violence from people with schizophrenia is real — significantly greater than it is in the broader population — and that the risk increases sharply when people have disturbing hallucinations and use street drugs. We also know that many people with schizophrenia hear voices only they can hear. Those voices feel real, spoken by an external, commanding authority. They are often mean and violent.
An unsettling question is whether the violent commands from these voices reflect our culture as much as they result from the disease process of the illness. In the past few years I have been working with some colleagues at the Schizophrenia Research Foundation in Chennai, India, to compare the voice-hearing experience of people with schizophrenia in the United States and India.
The two groups of patients have much in common. Neither particularly likes hearing voices. Both report hearing mean and sometimes violent commands. But in our sample of 20 comparable cases from each country, the voices heard by patients in Chennai are considerably less violent than those heard by patients in San Mateo, Calif.
Describing his own voices, an American matter-of-factly explained, “Usually it’s like torturing people to take their eyes out with a fork, or cut off someone’s head and drink the blood, that kind of stuff.” Other Americans spoke of “war,” as in, “They want to take me to war with them,” or their “suicide voice” asking, “Why don’t you end your life?”
In Chennai, the commanding voices often instructed people to do domestic chores — to cook, clean, eat, bathe, to “go to the kitchen, prepare food.” To be sure, some Chennai patients reported disgusting commands — in one case, a woman heard the god Hanuman insist that she drink out of a toilet bowl. But in Chennai, the horrible voices people reported seemed more focused on sex. Another woman said: “Male voice, very vulgar words, and raw. I would cry.”
These observations suggest that local culture may shape the way people with schizophrenia pay attention to the complex auditory phenomena generated by the disorder and so shift what the voices say and how they say it. Indeed, that is the premise of a new patient-driven movement, more active in Europe than in the United States, which argues that if you treat unsettling voices with dignity and respect, you can change them.
The Hearing Voices movement encourages people who hear distressing voices to identify them, to learn about them, and then to negotiate with them. It is an approach that flies in the face of much clinical practice in the United States, where psychiatrists tend to assume that treating such voices as meaningful encourages those who hear them to give them more authority and to follow their commands.
Yet while there is no judgment from the scientific jury at this point, there is evidence that at least some people find that when they use the Hearing Voices approach, their voices diminish, become kinder and sometimes disappear altogether — independent of any use of drugs.
This evidence is strengthened by a recent study in London that taught people with schizophrenia to create a computer-animated avatar for their voices and to converse with it. Patients chose a face for a digitally produced voice similar to the one they were hearing. They then practiced speaking to the avatar — they were encouraged to challenge it — and their therapist responded, using the avatar’s voice, in such a way that the avatar’s voice shifted from persecuting to supporting them.
All of the 16 patients who received a six-week trial of that therapy found that their hallucinations became less frequent, less intense and less disturbing. Most remarkably, three patients stopped hearing hallucinated voices altogether, even three months after the trial. One of those three patients had heard voices incessantly for the prior 16 years.
The more we know about the auditory hallucinations of schizophrenia, the more complex voice-hearing seems and the more heterogeneous the voice-hearing population becomes. Not everyone will benefit from the new approaches. Still, they offer hope for those struggling with a grim disease.
Meanwhile, it is a sobering thought that the greater violence in the voices of Americans with schizophrenia may have something to do with those of us without schizophrenia. I suspect that the root of the differences may be related to the greater sense of assault that people who hear voices feel in a social world where minds are so private and (for the most part) spirits do not speak.
We Americans live in a society in which, when people feel threatened, they think about guns. The same cultural patterns that make it difficult to get gun violence under control may also be responsible for making these terrible auditory commands that much harsher.
For more mental health news, Click Here to access the Serious Mental Illness Blog
To all appearances, Eleanor Longden was just like every other student, heading to college full of promise and without a care in the world. That was until the voices in her head started talking. Initially innocuous, these internal narrators became increasingly antagonistic and dictatorial, turning her life into a living nightmare.
Diagnosed with schizophrenia, hospitalized, drugged, Longden was discarded by a system that didn’t know how to help her. Longden tells the moving tale of her years-long journey back to mental health, and makes the case that it was through learning to listen to her voices that she was able to survive.
Eleanor Longden overcame her diagnosis of schizophrenia to earn a master’s in psychology and demonstrate that the voices in her head were “a sane reaction to insane circumstances.”
For more mental health news, Click Here to access the Serious Mental Illness Blog
[Article of Interest] Why Rename Schizophrenia With “Psychosis Susceptibility Syndrome?
By Christian Nordqvist
Renaming “Schizophrenia” is the subject of discussion in a new Forum in the journal Psychological Medicine. Two authors propose a new name “Psychosis Susceptibility Syndrome” and experts comment.
The authors of the article, Aadt Klijn and Bill George, from the Dutch Association of and for People with a Psychotic Vulnerability (Anoiksis), reflect what several commentators have been saying for a long time.
The aim of having the new name - Psychosis Susceptibility Syndrome - is partly to better reflect the signs and symptoms of this mental illness, and to eradicate the stigma, prejudices and misleading significance surrounding the term “schizophrenia” and “schizophrenic”.
Schizophrenia - a word with negative undertones
The term ‘schizophrenia’ is loaded with negative connotations. Even today, when the average man or woman hears the term schizophrenia, it brings up images of dangerous and unreliable ‘lunatics’.
The term affects people both ways, it carries with it a general stigma, and causes self-stigma in those who have been diagnosed. A person with schizophrenia is stamped by society with a negative hallmark. As the patient has been brought up to perceive ‘schizophrenics’ negatively, they take the negative blueprint to themselves, which in turn leads to a negative self-image.
Not only does the term incite prejudice, it is a source of misunderstanding. Most people think schizophrenia refers to a Jekel and Hyde split personality, which is not the case - therefore the term is a misnomer. There are split-personality disorders, but they have nothing to do with what we currently call schizophrenia.
WHO (World Health Organization) was approached recently with a request to adopt the new term, which is currently not recognized anywhere. The Japanese Society of Psychiatry and Neurology renamed Seishin Bunretsu Byo (split mind) to Togo-Shitcho Sho (integration dysregulation syndrome).
Why the name Psychosis Susceptibility Syndrome (PSS)?
Anoiksis chose the term Psychosis Susceptibility Syndrome (PSS) for the following reasons:
-Psychosis - because of the unreality of delusions and hallucinations.
-Susceptibility - patients are not necessarily psychotic all the time (but it is latent).
-Syndrome - according to Medilexicon’s medical dictionary, a syndrome is “The aggregate of symptoms and signs associated with any morbid process, together constituting the picture of the disease.” Syndrome includes the negative and cognitive symptoms also linked to the disease. Negative symptoms might include lack of feelings and energy, while cognitive symptoms could be concentration and memory problems, or a reduced capacity for problem-solving, for example.
The majority of health care professionals, patients and their loved ones agree that the name should be changed. However, most people believe that what really needs changing is the public perception of schizophrenia.
Dr Alison Brabban, Honorary Clinical Senior Lecturer in Clinical Psychology in the Mental Health Research Centre, Durham University, England, and colleagues wrote:
There is no doubt that for many, the diagnosis of schizophrenia can be as debilitating as the associated symptoms. The word ‘schizophrenia’ appears to do more harm than good, more frequently communicating prejudice and misinformation than fact and hope.
It is indisputable that the stigma surrounding the term schizophrenia can in itself lead to misery for many with the diagnosis.
Therefore, any label that removes some of these disadvantages would be a welcome change.
Professor Richard P. Bentall, Lecturer at the Institute of Psychology, Health and Society, University of Liverpool, England, said “Schizophrenia has been a contested label for many years not only because it is associated with stigma, but also because it fails to achieve any of the purposes for which it was originally designed. Rebranding schizophrenia solves none of these problems. By replacing one ill-fitting label with another, we do nothing to advance psychiatric research or to develop better treatment plans for our patients.
It is not hard to locate some of these causes. Without a doubt, one is the media’s treatment of schizophrenia, which consistently over-emphasizes the risk of dangerous behaviour by patients, conveying the impression that people with psychosis are responsible for an epidemic of interpersonal violence. The reality is, of course, quite different. Whereas there is an increased risk of violence associated with psychosis, most of this is attributable to co-morbid substance abuse and most psychiatric patients pose absolutely no risk to their neighbors.
The problem has become not whether to replace schizophrenia, but what to replace it with. Simple re-labelling will do nothing to address the many scientific and clinical limitations of the categorical approach to diagnosis. Nor is it likely to address the problem of stigma, which arises out of background assumptions about the nature of severe mental illness. To persuade the general public to be more accepting of people with mental illness, we must persuade them that psychosis arises, in part, understandably from adverse life experiences (while of course acknowledging that genetic factors must play some role), that it does not necessarily lead to violence, and that recovery is possible.”
A study started off by a team of experts in Sydney, Australia, reported in the journal Schizophrenia Bulletin that homicides of strangers by individuals diagnosed with schizophrenia are extremely rare events.
For more mental health news, Click Here to access the Serious Mental Illness Blog
Avatars Ease Voices for Schizophrenia Patients
By Lorna Stewart
BBC Health Check
Use of an avatar can help treat patients with schizophrenia who hear voices, a UK study suggests.
The trial, published in the British Journal of Psychiatry, focused on patients who had not responded to medication.
Using customized computer software, the patients created avatars to match the voices they had been hearing.
After up to six therapy sessions most patients said their voice had improved. Three said it had stopped entirely.
The study was led by psychiatrist emeritus professor Julian Leff, who spoke to patients through their on-screen avatars in therapy sessions. Gradually he coached patients to stand up to their voices.
"I encourage the patient saying, ‘you mustn’t put up with this, you must tell the avatar that what he or she is saying is nonsense, you don’t believe these things, he or she must go away, leave you alone, you don’t need this kind of torment’,” said Prof Leff.
”The avatar gradually changes to saying, ‘all right I’ll leave you alone, I can see I’ve made your life a misery, how can I help you?’ And then begins to encourage them to do things that would actually improve their life.”
By the end of their treatment, patients reported that they heard the voices less often and that they were less distressed by them. Levels of depression and suicidal thoughts also decreased, a particularly relevant outcome-measure in a patient group where one in 10 will attempt suicide.
Treatment as usual
The trial, conducted by Prof Leff and his team from University College London, compared 14 patients who underwent avatar therapy with 12 patients receiving standard antipsychotic medication and occasional visits to professionals.
Later the patients in the second group were also offered avatar therapy.
Only 16 of the 26 patients completed the therapy. Researchers attributed the high drop-out rate to fear instilled in patients by their voices, some of which “threatened” or “bullied” them into withdrawing from the study.
New treatment options have been welcomed for the one in four patients with schizophrenia who does not respond to medication. Cognitive behaviour therapy can help them to cope but does not usually ease the voices.
Paul Jenkins, of the charity Rethink Mental Illness, said: “We welcome any research which could improve the lives of people living with psychosis.
"As our Schizophrenia Commission reported last year, people with the illness are currently being let down by the limited treatments available.
”While antipsychotic medication is crucial for many people, it comes with some very severe side effects. Our members would be extremely interested in the development of any alternative treatments.”
A larger trial featuring 142 patients is planned to start next month in collaboration with the King’s College London Institute of Psychiatry.
Prof Thomas Craig, who will lead the larger study, said: “The beauty of the therapy is its simplicity and brevity. Most other therapies for these conditions are costly and take many months to deliver.
”If we show that this treatment is effective, we expect it would be widely available in the UK within just a couple of years as the basic technology is well developed and many mental health professionals already have the basic therapy skills that are needed to deliver it.”
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EARTH DAY 2013
By Ron Unger
Earth Day 2013 is a good time to reflect on how problems in our mental health system reflect deep flaws in “normal” conceptions of what it means to be a human being. These flawed conceptions then contribute in a critical way to the climate crisis that threatens us all.
In noticing the connection between flawed ideas about “normality” and the environmental crisis that threatens to bring down our civilization, I’m following in the footsteps of David Oaks, director of MindFreedom, who would likely be writing about this himself if he wasn’t too busy working in rehab, trying to get back functioning after breaking his neck last December. (By the way, MindFreedom really needs donations right now to take it through a period of financial crisis: read why here , or go to http://www.mindfreedom.org/join-donate to make donations.)
A key problem is that within most of the mental health system, individuals are seen as healthy when they “fit in” or adjust to the overall society. To the extent that they don’t adjust, they are seen as “having issues,” and those most out of adjustment are seen as “psychotic.”
At times, it seems to make sense to look at things this way: adjustment seems to solve problems, and not fitting in, or being maladjusted, gets in the way of solving them. People who are severely maladjusted may endanger their own lives or those of others.
Unfortunately, humanity is finding out that in the absence of wisdom, people can fit in with each other and be socially “well adjusted” and yet be causing catastrophic problems, such as by undermining the health of the ecosystems they live within and depend on for survival. Or, as David Oaks likes to put it, “normal people are destroying the planet!”
R.D. Laing once said “It is of fundamental importance not to make the positivist mistake of assuming that because a group’s members are in formation this means that they’re necessarily on course.” Of course, those who break from formation are not necessarily on course either, but if the crowd is heading over a cliff, it is important at some point to break away and start experimenting with other directions. Unfortunately, in our society, young people who experience trouble while they experiment with new directions are simply labeled as “ill” and are seen as in need of being drugged back to some semblance of what is “normal” within the culture, even though the culture itself is headed straight for environmental catastrophe.
It seems we need a more complex idea about what constitutes health, and sickness. I think the notion of “creative maladjustment” as described in Sophie Faught’s previous Mad in America post, “Taking Martin Luther King Jr’s Call For Creative Maladjustment Seriously” is exactly what we need as the foundation for a definition of “mental health” that would lead us towards both a functional mental health system and a functional society.
There seems to be little question that being maladjusted to something that is healthy is problematic. So for example the person who has healthy food but thinks it is all poisoned will have difficulties. But being adjusted to something that is not healthy is also problematic, and can be a much bigger problem. The notion of “creative maladjustment” addresses both sides of this dilemma, suggesting the use of creative discretion in when and how to be maladjusted, rather than either supporting either blind conformity and adjustment, or reckless and undiscriminating maladjustment.
When mental health workers become able to recognize the possible value of maladjustment, they become less sure they have complete answers, and become able to relate to those they intend to help from a position of being fellow human beings searching for positive approaches to life rather than from a role of being authorities in what it means to be “sane.” Mental health workers who recognize the value of searching, and of being maladjusted, can see possible value in “mad” experiences, and can connect on a peer level even when they are relating to people who have experiences that are very different from their own. Being able to connect in this way is, I think, a precondition to being able to be genuinely helpful.
Of course, if one talks about seeing something positive in psychotic experiences, one can expect to be accused of “romanticizing madness.” But somehow, those who worry that people will go too far in seeing something positive in mad experience never worry about the opposite, the possibility that people will “awfulize” madness, that they will see only the negative in it, and so will increase fear of madness and mental health stigma. (It’s actually pretty bizarre that our mental health system will work so hard to convince people that mad experience is nothing but bad, and then turns around and tries to run “anti-stigma campaigns”!)
Recognizing “creative maladjustment” as a better definition of mental health allows mental health workers to honor the spirit of mad rebellion as being of potential value, even if not every manifestation of that spirit is helpful, and even if some manifestations can be highly dangerous! Young people need to know that their efforts to be maladjusted to much of what is going on makes sense, even as they also need to know that it typically takes work and reflection to refine that maladjustment into something that is usefully creative.
Another part of making maladjustment creative is finding ways to come together with others in carrying it out. This need to reconnect with others can seem paradoxical, because there is always the danger that if one connects too much, one will be right back “in formation” with a dysfunctional way of being organized, and a dysfunctional society! The trick is to find a way to be autonomous enough to find a direction based on something deeper than just fitting in or being normal, while also being connected enough to cooperate with others in getting support and in sharing ideas and perspectives. This is much easier to do when the culture, or at least a subculture, supports the idea of something like creative maladjustment.
When I was an alienated young man, it helped me greatly to find others who were maladjusted in their own ways and to find that we could work together in ways that were a lot of fun! It was extremely helpful for us to support each other’s ability to move and create independently, even when the creativity was more silly than serious. A long time friend of mine, John Law, coauthored a book coming out in May on the Cacophony Society, an organization closely related to the Suicide Club, which was the group he and participated in together back in the 1970’s. For me, it was the coordinated maladjustment in the events we created that helped me reconnect with the larger world, and I think we need to give greater recognition to the value of such ways of connecting.
MindFreedom’s current promotion of a “Creative Maladjustment Week” can be seen as just one small step toward the creation of a new ideal in our culture, the ideal of always aiming to be maladjusted toward what is destructive, rather than the flawed idea of mental health as “adjustment.” Communicating the ideal of creative maladjustment to the public can also be a way of increasing awareness about how the process of being “mad” may be part of exploration toward new ways of being, with some of those new ways being possibly that which may ultimately save us from catastrophe.
It will be of little long term use to reform society and the mental health system if the ecological crisis then completely undermines civilization, leading to massive famine, die offs, migrations and wars. Any mental health reforms would likely get lost in the chaos. But I believe mental health reform is still worth working toward at this point, because changing the aim of mental health work, from adjustment to creative maladjustment, could shift the mental health system toward actually supporting exploration in new ways of thinking and being instead of always attempting to suppress it. We need such exploration at this time more than perhaps any other.
I also want to point out that a key part of creative maladjustment is balancing personal fun, joy, and humor with activism and attention to the larger realities. E.B. White is famous for having said ““I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult.” David Oaks helped me learn how to approach life this way, and I think it is key to being an activist and not burning out. It is true that finding the balance can be difficult, but each step of the way can also be incredibly rewarding, and every other way of being in the world makes a lot less sense.
I’m hoping in the near future to write about how to create public events or spectacles that communicate to the public both about the role of creative maladjustment in cultural evolution and renewal, and about the vital necessity of doing something different before the climate crisis escalates into something that kills most all our possibilities.
Till then, I hope you persist in your own forms of creative maladjustment, and in connecting with others on that wavelength, and I also hope that you support MindFreedom International in continuing to do its work of linking together groups all over the planet which working to support people’s access to human rights and to creative maladjustment. Like I said earlier, it is a tricky period financially for MindFreedom as it copes with David being in rehab, but it’s vital we keep this group going that has done so much for keeping these issues alive all over the world. Again, you can read why here , or go to http://www.mindfreedom.org/join-donate to make donations.
Thanks for all that you do to support mental health reform, creative maladjustment, groups like MindFreedom, and all the actions you take in support of insuring a future for the human race on this beautiful planet of ours!
Dr. Seikkula talks about the Open Dialogue approach to psychiatric interventions, in which he describes how this approach was developed, as well as the basic principles of the approach which have emerged from analysis of the results.
Open Dialogue is a Finnish alternative to the traditional mental health system for people diagnosed with “psychoses” such as “schizophrenia” is “Open Dialogue.” This approach aims to support the individual’s network of family and friends, as well as respect the decision-making of the individual.
Find out more about Open Dialogue HERE.
[Article of Interest] People with Mental Illness at Highly Increased Risk of Being Murder Victims
Risk highest among those with substance use disorders
People with mental disorders have a highly increased risk of being victims of homicide, a large study published today on bmj.com suggests. The perpetration of homicide by people with mental disorders has received much attention, but their risk of being victims of homicide has rarely been examined. Yet such information may help develop more effective strategies for improving the safety and health of people with mental illness.
So a team of researchers from Sweden and the USA assessed mental disorders and homicides across the entire population of Swedish adults between 2001 and 2008. Mental disorders were grouped into the following categories: substance use disorder; schizophrenia; mood disorders including bipolar disorder and depression; anxiety disorders and personality disorders. Results were adjusted for several factors such as sex, age, marital status, educational level, employment status and income. Of 7,253,516 adults in the study, 141 (22%) out of 615 homicidal deaths were among people with mental disorders.
After adjusting for several factors, the results show that people with any mental disorder were at a fivefold increased risk of homicidal death, relative to people without mental disorders. The risk was highest among those with substance use disorders (approximately ninefold), but was also increased among those with personality disorders ((3.2fold), depression (2.6fold), anxiety disorders (2.2fold), or schizophrenia (1.8fold) and did not seem to be explained by substance use.
One explanation for the findings may be that those with mental disorders are more likely to live in high deprivation neighbourhoods, which have higher homicide rates, say the authors. They may also be in closer contact with other mentally ill people and be less aware of their safety risks owing to symptoms of the underlying illness. They suggest that interventions to reduce these risks “should include collaborations between mental health clinics and the criminal justice system to develop personal safety and conflict management skills among people with mental illness.” Improved housing, financial stability, and substance abuse treatment may also reduce vulnerability to violent crime, they add. A key implication of these new findings is that clinicians should assess risk for the full array of adverse outcomes that may befall people with mental health problems, say Roger Webb and colleagues at the University of Manchester, in an accompanying editorial. This would include being a victim of violence as well as committing it, abuse and bullying, suicidal behaviour, accidental drug overdoses, and other major adverse events linked with intoxication or impulsivity.
These risks go together, and people with mental illness, as well as their families, should receive advice on avoiding various types of harm, they suggest. They acknowledge that some important questions remain unanswered, but suggest that national mental health strategies “should reflect the broad nature of safety concerns in mental healthcare, while antistigma campaigns among the public should aim to counter fear of mentally ill people with sympathy for the risks they face.”
“Mental disorders and vulnerability to homicidal death: Swedish nationwide cohort study”, Casey Crump et al. BMJ. 2013;346:f557 doi:10.1136/bmj.f557
Editorial: “Risk of people with mental illnesses dying by homicide”, Roger Webb et al. BMJ. 2013;345:f1336 doi: 10.1136/bmj.f1336
[Article of Interest] Edward Deeds, Outsider Artist, Leaves Behind Hauntingly Innocent Drawings From Mental Institution
By Priscilla Frank
”The artist really should be lost to history, and certainly these drawings should,” said curator Tom Parker of his upcoming exhibition. The works in question are by Edward Deeds, a mental patient at Missouri State Hospital for almost 40 years. The show, entitled, “Talisman of the Ward: The Album of Drawings by Edward Deeds,” presents 30 works by the outsider artist.
Deeds, who was diagnosed with dementia praecox and schizophrenia, was committed to a mental institution in 1936. Beyond this fact we know little about his condition, personality or life, although the curator sees all he needs to in Deeds’ artwork. “The images have one fabulous clue on every page,” Parker explained to the Huffington Post. “State Lunatic Asylum, written on the paper by the hospital. One poetic detail which encapsulates everything you need to know about the artist and his circumstance.”
The artist’s drawings, crafted on the official hospital stationary, radiate a remarkable innocence given the circumstances of their creation. Whimsical lions, wide-eyed characters and vintage vehicles comprise a pictorial land far beyond the mental facility walls. The only reminder of Deeds’ dark reality is recurrence of the letters “ECT,” a likely acronym for the controversial shock treatment known as electroconvulsive therapy.
At the time of Deeds’ death he gave his collection of drawings to his mother, who then passed them to her other son, who stored them in his attic. Years later, the drawings were tossed out to a curbside junk pile and were discovered by a 14-year-old boy who became fascinated with them. He kept the works safe for 36 years.
The precious drawings, both unpretentious and cryptic, present an idyllic vision from a mysterious perspective. The story of their creation and survival is as magnetic as the raw emotion in his innocent crayon strokes.
“Talisman of the Ward: The Album of Drawings by Edward Deeds” will show from January 10 until February 9, 2013 at Hirschl & Adler Modern.
[Documentary of Interest] People Say I’m Crazy
Making this film was my idea.
At the beginning, when I had my psychotic break in college, I did not know what was happening with me. I thought that by filming I could explore my illness and try to understand what was going on.
I filmed everything—from being catatonic to when I had ECT (electro-convulsive, or electroshock therapy).
Later on I kept filming because I was so angry about how much misinformation there is about brain diseases like mine. I wanted the world to know what it’s like to live with labels such as “psychotic,” “schizophrenic” and “severely disabled.”
I wanted to let the world know what it is really like to live with schizophrenia.
- John Cadigan
People Say I’m Crazy is the only film about schizophrenia ever made by someone with schizophrenia. Mental illness is viewed from the inside out as the audience becomes witness to a first-hand account of the symptoms of schizophrenia and the disease’s effect on one man and his family. [It] has been hailed as a unique, powerful, and ultimately optimistic statement on coping with schizophrenia, challenging stereotypes and humanizing an often misunderstood illness.
This film tells the story of a young man, John Cadigan, who develops schizophrenia at age 21 while studying art at Carnegie Mellon University in Pittsburgh, Pennsylvania. Initially devastated by his diagnosis, John eventually finds appropriate treatment and works his way into recovery, with the help of family and friends. The spotlight is also turned on John’s family as they struggle to understand John’s disease. With courage and love, the family learns how to support John in his efforts to resume living an independent and fulfilling life. By the film’s conclusion, John rejoins his family and community, fulfills his dream of launching his career as an artist, and—an important accomplishment for those who suffer from schizophrenia—moves into his own apartment to begin living an independent life.
The Filmmaker: John Cadigan
John made the film with the help of his sister, filmmaker Katie Cadigan, and Oscar-winning documentary filmmaker, Ira Wohl. John filmed his life for over 10 years—from when he had his first psychotic episode at age 21 until he was well into recovery a decade later. Throughout the process, he managed to record his story despite the cognitive and emotional difficulties created by his disease.
[Article of Interest] Side Effects of Mental Illness Drugs Cause Sudden Death
by Kerri Knox, RN
Schizophrenia is a scary and difficult chronic mental illness- both for the person and for their family who all have to live with the diagnosis. In most cases, antipsychotic medications need to be taken forever to control the disturbing symptoms. But rarely is anyone told that these medications not only double the risk of sudden cardiac death, but also put the sufferer at risk for several other chronic illnesses as well.
The severe mental condition that has been termed schizophrenia is NOT the ‘multiple personality disorder’ that many think of when they hear the term, but is a different mental illness characterized by bizarre behaviors like paranoia, hearing voices, and having hallucinations. It is often acquired after a stressful life event and occurs swiftly and unpredictably in what is known as a ‘psychotic break’. This is devastating for the patient and their family who suddenly have to live with a diagnosis of mental illness. And that is just the first step in a life filled with doctors, hospitals, medications and psychiatrists- with little hope to ever really have a normal life again.
Schizophrenia and a handful of medications forever
There is no ‘cure’, in traditional medicine, for Psychosis; and a prescription for one or more ‘antipsychotics’ with names like Haldol and Risperdal, along with a cocktail of other drugs often prescribed for anxiety, depression and sleep are frequently on the menu. But what these people are rarely, if ever, told about are the long term side effects of these drugs. While doctors are ever prescribing anticholesterol ‘statins’, aspirin and blood pressure medications in order to achieve a 1 - 2% reduction in heart disease, they are knowingly giving schizophrenic individuals, who generally get their first psychotic break as a teenager or young adult, a shortened lifespan from the medications that they are prescribing.
In the research available on these drugs, it is well known that Sudden Cardiac Death is a ‘side effect’ of antipsychotic medications. In fact, these medications DOUBLE the risk of sudden cardiac death. In the beginning, however, it does not give them the “heart disease” of clogged arteries that we associate with heart attacks. The immediate risk of antipsychotics is that they give sufferers a high risk for a very specific disorder called ‘Prolonged Q-T interval’.
Prolonged Q-T Interval gets its name from the prolonged time that it takes for the electrical activity of the heart to return to normal after each heartbeat. But this extra time isn’t measured in minutes or seconds, but in hundredths of a second- making it difficult to diagnose. But this extra millisecond can have the devastating consequence of putting the taker of these medications into an abnormal cardiac rhythm called Ventricular Fibrillation- which will quickly lead to death without immediate emergency care. And this will come on without pain, shortness of breath or any of the other ‘warning signs’ of a heart attack because it is not clogged arteries that are the problem, but the electrical system that is the primary problem.
Even worse, antipychotics don’t just put people into your vanilla, standard everyday Ventricular Fibrillation that generally responds well to the dramatic ‘paddles on the chest, everybody get away from the patient and shock them’ type of defibrillation that you see on television. It actually puts them into a very specific TYPE of Ventricular Fibrillation called Torsades de Pointes, that doesn’t change to a normal rhythm with the shocks and heart starting medications that are the ‘standard protocol’ for restarting the heart. Instead, ‘Torsades’ requires an immediate infusion of intravenous magnesium. As hospitals and emergency rooms have magnesium at hand, this shouldn’t be such a hard thing to do; but unfortunately, Torsades de Pointes is fairly rare and is difficult to recognize, so in many cases it is not even considered until the shocks and CPR are not working- and by then it is often too late for the magnesium to be effective.
But wait, there’s more…
Not only do antipsychotics double the risk of deadly heart rhythms, but they ALSO increase the risk of getting diabetes, high blood pressure, high cholesterol and obesity- which are risk factors for ‘regular’ heart disease complete with clogged arteries, angioplasty and open heart surgery. Fortunately, true psychosis is rare- so doctors don’t prescribe these dangerous medications unless they are absolutely necessary… right?
Unfortunately, this is not the case at all. In fact, over 200,000 people in the US are newly diagnosed each year and hundreds of thousands of prescriptions for antipsychotics are written every year. They are being given to adolescents, children and even preschoolers as young as two years old. Most of these are prescribed by primary physicians without the child having even had an evaluation by a psychiatrist. And almost half were written, not for schizophrenia as they are intended, but for ADD and ADHD for which the drugs have never even been tested!
"Rates of (doctor’s office) visits that resulted in a psychotropic prescription increased from 3.4 percent in 1994-1995 to 8.3 percent in 2000-2001. By 2001, one out of ten office visits by adolescent males resulted in a prescription for a psychotropic medication." Trends in the use of psychotropic medications among adolescents, 1994 to 2001.
So, while researchers who study the cardiac death risk profile of antipsychotic drugs are advocating “sharp reductions” in the use of these agents- doctors are ignoring this advice and are steadily increasing the number of antipsychotic drugs prescribed each year. These patients, who are often children and teens without true schizophrenia, will somehow have to deal with several chronic health conditions that will not only shorten their lives, but decrease the quality of a life already made more difficult by mental illness.
Fountain House is about the power of community. It was created to relieve the loneliness and stigma that affect so many people who are living with serious mental illnesses, like schizophrenia, bipolar disorder, and major depression. Serious mental illness disrupts lives - people lose their jobs, they drop out of school, they alienate their families and friends, and they end up alone.
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[Article of Interest] "Stigma" of Mental Illness a Setback for Patients, Society
As posted on CBSnews.com
We don’t know what drove the gunman in Newtown to kill, and the fact is 95 percent of violence is committed by people who are not mentally ill. Even so, the shooting has put a spotlight on mental illness. All too often, the stigma attached to it keeps people from getting diagnosed and treated.
Four years ago, Zac Pogliano was a fun-loving teenager. He had plenty of friends and played in a rock band. His mother Laura remembers when he suddenly became paranoid.
"I would come home and bang on my own door after work every day, ‘Please let me in. It’s your mom. It’s your mom.’ And finally, I would crawl through my window," she says.
"He would lock me out. And then one day, horribly, literally, he opened the door to me and I could tell by the look on his face that he did not know who I was."
Eventually, Zac made a confession.
"He said, ‘Did you know I’ve been hearing voices for a year?’ … I said ‘My darling, why would you not tell your own mother? I would never turn away from you.’ He said, ‘Because no one wants a crazy person.’”
Zac’s fear of telling anyone about the voices delayed his diagnosis. He had schizophrenia. He still loves music, but the disease has forced him to put his life on hold. He’s been hospitalized several times.
Zac says the voices were criticizing him. “I can tell you it was a man voice and woman voice, picking on me,” he says.
Schizophrenia usually strikes young adults between the ages of 16 and 30. Not only can they hear voices, they may also suffer from visual hallucinations, delusions and extreme paranoia.
Zac can appear robotic and emotionless. Those are symptoms of the disease. The medication he takes can worsen those symptoms and also cause weight gain.
Zac agrees that there is a stigma attached to mental illness. “People will judge you, especially after someone gets assaulted by a crazy guy. I could be that crazy guy,” he says. Zac has never been violent.
While about 95 percent of violence is committed by people with no serious mental illness, those with schizophrenia are two to four more times more likely to commit violence than the average person. Studies have shown that proper treatment significantly lowers that risk.
Five days a week, Zac goes to an outpatient treatment program at Johns Hopkins Bayview Medical Center in Baltimore.
"We need to look at Zac every single day, we need to make sure that he’s taking medicine because that makes him think clearly," says Krista Baker, his therapist. "The longer that we can get Zac to be doing well, the better the prognosis he has."
Zac says he feels like he’s on the right track.
”I’m a 21-year-old man and I would like to have a steady life with a job and maybe a family some day.”
His mother, Laura, says her biggest misconception was that she could “fix it. That if I tried hard enough, he would regain his health. And he would be exactly like he was; and that’s very hard to accept.”
The stigma attached to mental illness continues to be a huge barrier and delay to early diagnosis and treatment.
[Article of Interest] I’m Elyn Saks and this Is What It’s Like to Live with Schizophrenia
By George Dvosky
Elyn Saks first started noticing that something was wrong when she was 16. One day, and without reason, she suddenly left her classroom and started walking home. It turned into an agonizing journey in which she believed all the houses in her neighborhood were transmitting hostile and insulting messages directly into her brain. Five years later, while attending law school at Oxford, she experienced her first complete schizophrenic break. Saks struggled over the course of the next decade, but she came through thanks to medication, therapy, and the support of friends and family.
Schizophrenia as a health condition is as neglected as it’s misunderstood. People tend to get squeamish when it comes to mental illness, convincing themselves that it’s not a wide scale problem, or that people who suffer from it are lost causes. At the same time, many people cling to outdated notions about the disorder.
Indeed, schizophrenia is not as rare as some people think. It has been estimated that anywhere from 0.3 to 0.7 percent of the population is afflicted with it. For a country like the United States, that’s anywhere from 940,000 to 2,200,000 people. And the costs are enormous, estimated at $62.7 billion per year in the U.S. alone. Yet, schizophrenia receives only a small fraction of the amount of medical research dollars that go into other serious diseases and disorders.
It’s also commonly mistaken for multiple personality disorder, what’s now referred to as dissociative identity disorder (DID). These two conditions are distinct, though some crossover exists; DID patients sometimes exhibit psychotic symptoms. Also, both DID and schizophrenia can be triggered by traumatic experiences. But that’s where the similarities end.
Another common misconception about schizophrenia is that people who suffer from it are extremely violent.
"And that’s just not true," says Saks. "Most people with schizophrenia are less violent, but are more likely to be victimized.” The big, violent folks, added Saks, tend to be teenage males and substance abusers.
There’s also a misconception that all people with schizophrenia can’t hold down a job, and that they lose the ability to work in any kind of meaningful way. Or that they can’t live independently, that they need some kind of supervised living arrangement.
Like many other psychological disorders, schizophrenia follows along a spectrum in terms of its severity. While many people can become incapacitated by their symptoms, Saks argues that most of them could benefit from drugs and therapy.
And indeed, Saks is convinced that there are more “high functioning” people with schizophrenia than is typically assumed. To that end, she, along with her colleagues at UCLA and USC, designed a study to recruit high functioning people with schizophrenia in the LA area. Specifically, they were looking to study professionals, a group that included MDs, PhD candidates, teachers, CEOs, and full-time students.
"I mean, we got 20 subjects fairly quickly," she told me, "I started to suspect that I wasn’t unique, that there were many other people like me. It would interesting to know what the stats are on how many people with schizophrenia are so-called "high functioning" professionals."
Moreover, Saks is convinced that, with proper resources, nearly everyone can live up to their potential — regardless of their situation or status.
"There are going to be some people who you do everything for and they still won’t be able to thrive," she says, "But I think many more people can do better than we give them credit for — but instead, we prematurely tell people to lower their expectations.”
Indeed, antipsychotic medications have revolutionized the treatment of schizophrenia — and they work startling well. "A lot of people get on medication and they completely recover and never require therapy," says Saks. But there are some people who don’t respond to medication — and that, she argues, is where therapy and social support could potentially help.
“The best evidence with major mental illness shows that the most effective strategy is to use a combination of meds and a therapy for choice,” says Saks. “For me, I know I need the therapy and the medication. I need both of them. If one of them were to go away I would probably be really compensated.”
Saks is currently in psychoanalytic treatment, where she attends sessions five days a week. And by doing so, she’s going against the grain; conventional wisdom says psychoanalytic treatment shouldn’t work for people with psychosis. But she’s convinced it’s helping.
Saks told me about several aspects of psychoanalytic treatment that have been tremendously beneficial for her — and they’re not typical things that psychoanalysts do.
For example, because stress is particularly bad for psychiatric illnesses, Saks has been taught to identify her stressors and avoid them. Or cope with them at the very least. She has also learned to bolster her “observing ego” — that part of her brain which allows her to step back and observe her mind, feelings, and thoughts in order to understand them and not get swept up.
"It’s also a place where you can bring your thoughts," she says. "A lot of therapists have a rule where their patients cannot articulate their delusions or hallucinations — but to me you need to have a place where you can do that, where it’s safe. It’s sort of like a steam valve. I don’t have to do it in my outside world, I have a place where I can do it in therapy.”
Another important thing, says Saks is insight.
"People have different theories about psychotic symptoms," she says. "Some people think they’re just the random firing of neurons that don’t have any meaning. But I think they have meaning and that they tell you some truth about your psychological reality. So, when I say I’ve killed hundreds of thousands of people, it’s really an archaic way of saying I feel like a very bad person. But even though it’s meaningful in this sense, it doesn’t help patients in the moment of the psychotic symptoms that they interpret.”
Saks believes that extreme and exaggerated ideations are a defense mechanism — which in some circumstances can make a person feel better or safe.
Saks closed our conversation by noting that, outside of medications and drugs, it’s people who can make the greatest impact.
“It’s so important to have a benign, smart, caring, non-judgmental person that accepts you — not only for the good — but for also the bad and the ugly,” she said, “That is incredibly empowering.”