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Reflections on Compassion and Uncertainty at ISPS 2015

In the Mad in America blog posts by Noel Hunter and by Sandy Steingard, there have already been great reports on ISPS 2015, but I would like to share my own thoughts about what was most significant and directions for the future.

For me, the strongest emotional moment came when heard the presentation by Silje Marie Strandberg, an ex patient, and Lone Viste Fagerland, her mental health nurse.  Silje shared what began as a very dark story, about her being bullied as a child, then becoming extremely withdrawn, suicidal and “psychotic,” then being hospitalized for years without hope for anything better.   This began to change only after she met a new nurse, the co-presenter, Lone.  Silje shared how she first strongly disliked Lone, yet gradually learned to trust her as Lone persisted in efforts to make contact, and especially as she offered physical touch in a way that crossed what are usually seen as “good boundaries” in mental health treatment.

Silje shared that even in her withdrawn state she had a definite sense that in order to reconnect as a human being, she was going to need physical affirmation and touch from someone outside her family; yet she also knew that in the hospital “they don’t do that kind of thing.”  It was because Lone broke out of such hospital norms, and offered hugs, extended hand holding, backrubs, hair brushing and other kinds of non-exploitive physical contact, as well as efforts to be present beyond the demands of her normal duties, that Silje was able to begin to believe in herself and to re-connect with the social world.  And reconnect she definitely did:  she presented with a warm vitality that was truly impressive!

To me, this story cut right to the heart of what real mental health “help” can be.  So it’s quite sad to contrast the story she and Lone told with a tale I heard just yesterday, of a worker in an hospital who was fired for extending just one hug to a patient the worker had seen for two years, at the point where they were having to say goodbye.  Physical contact like hugs were just against policy.  That, within an institution that claims it is for healing……

The idea of connecting around our basic humanity of course isn’t new; quite a few of the presenters for example reminded us of Harry Stack Sullivan’s reminder from early in the last century that we are all “more simply human than otherwise.”  Unfortunately, it is all too easy for the mental health system to forget this common humanity when a person is in a state that seems extreme or psychotic.  I believe it is the failure to focus on this common humanity that leads to the destructiveness of so much mental health work, but it doesn’t have to be that way.

A man has been insisting to everyone that he is pregnant.  What should be done?  Aaron Beck (known as the “father” of CBT, and now 93 years old) proposed a simple answer in his talk that opened the conference.  In the story Beck related, the man was first asked what was good about his condition.  He answered that being pregnant was good because it meant he would soon have someone to love.  He was then asked if he had ever had this before, and reported yes, when he had a pet dog – so the next step in “treatment” was to help him start a volunteer job in an animal shelter, thus helping him meet the actual human need that had been presenting as a “psychotic symptom.”  Simple, but so different from standard approaches that routinely miss the person in their effort to address the apparent “symptoms of an illness.”

I found one of the most promising approaches discussed at the conference to be compassion focused therapy (CFT).  Christine Braehler, our presenter, strongly suggested that anyone practicing this approach apply the techniques to themselves first (think how much different mental health treatment would be if it were routine for practitioners to apply the techniques to themselves first!)  I especially appreciate CFT’s multi-dimensional approach to compassion, aka love:  it’s not just about the therapist being compassionate with the clients, but also helping the clients learn to practice compassion toward themselves, toward dissociated parts or voices, and also giving and receiving compassion in relations with other people.

In the absence of warmth and compassion, rigidity sets in.  This is true not just for those who are failing to receive the compassion, but for those who are failing to give it.

One way professionals get rigid is by settling into theories, which then dominate how they see things.  An interesting presentation by Stephen Love explored “theory induced blindness” or the way having a theory often makes professionals ignore what may be key pieces of reality that don’t quite fit the theory.  Sometimes theory induced blindness in the mental health field gets pretty extreme; John Strauss for example shared his story from the 1980’s of trying to publish an outcome study showing lots of recovery after a “schizophrenia” diagnosis, and being rejected by a major journal that told him “we know this can’t be true.”  Unfortunately, there is still so very much that professionals think they know that just isn’t so.

My own presentation was on the importance of professionals admitting uncertainty about everything from the question of who is “ill” to the nature of reality itself.  Nick Putnam, involved in organizing training in Open Dialogue in the UK, said that the most challenging part of bringing the Open Dialogue approach into an existing mental health system seemed to be getting clinicians to become able to have the capacity to “not know” within their conversations.  Lewis Mehl-Madrona, a Native American psychiatrist with expertise in narrative approaches, spoke about a man he interacted with who had been hospitalized over a hundred times.  The man told Lewis that “you are the first person I’ve talked to who didn’t know what to do.”  Not surprisingly, Lewis was also more able to be helpful than those who had been so sure they knew what to do.

Of course, it isn’t as though the best helpers know nothing at all about what to do.   There are professionals who regularly don’t seem to know much of anything and don’t try anything beyond pills, and they tend to just become part of an atmosphere of hopelessness.  It seems to me that what probably what works best is when professionals have ideas, but also are able to be unsure if these ideas are correct, and so they can be available for a lively ongoing exploration.

While there were many valuable ideas offered at this conference, and while the exchange of ideas was very helpful, I was also bothered by the way a number of the plenary presenters seemed much too sure their ways of thinking were helpful, without awareness of possible down sides to their perspectives.  For example, many of the speakers were sure they were talking about something that could be safely described as “mental illness” and they were quite sure that this “illness” is something that can, without ambiguity, be thought of as something “bad.”  My belief, to the contrary, is that we will only be really good at helping people when we are less sure what is good and bad in people’s experience, and when we can engage with the openness that comes from that uncertainty.

I enjoyed Larry Davidson’s talk, and I understand he has made many positive contributions to our field.  But when he identified the scariest part of long term psychosis as the sense of losing one’s self (and seemed to imply that this experience is so devastating that it can only be understood as part of an illness) I was reminded of the period of my life when my own sense of self and my sense that anything had any meaning at all was falling apart – but the curious thing is that in my experience at the time, I found this loss of a sense of self to be profoundly liberating!

Of course, when a person grows up with lots of trauma and shame as I did, it isn’t surprising that one’s sense of self and system of making meaning is very oppressive, and so it can be liberating to have it all break down.  It is also true that such a breakdown can create huge problems, but we need mental health helpers who get that this whole process may be something other than “illness,” and who understand alternative perspectives such as spiritual approaches that see possible value in getting beyond the illusion of being a fixed “self.” In my journey I was lucky enough to find these perspectives and get the help I needed outside the system, but this kind of help should also be available inside the system.

Ultimately, I don’t think we can have a competent mental health system till we have one that can look at both the positive and the negative sides of extreme states.  We need a mental health system that can understand the human concerns that lead people, especially young people, into wild and paradoxical mental and emotional terrain, so we can help people move toward what makes sense to them in a safer way rather than insist they always stay within the boundaries of conventional society.

Karen Naessens was one person who spoke about the importance of mental health workers learning to do this.  She shared some of her own difficult yet valuable experiences, the importance of learning to affirm what was good about them, and in regards to normality commented that “I don’t have anything against normal, it’s just that I’ve always had my missions and being normal has not been one of them.”

It seems to me we are just starting to imagine what mental health services will be like if we learn to really listen to people like Karen, if we truly collaborate with people in extreme states, helping them discover their own version of health and progress, and ways to accomplish their own missions, rather than impose our own definitions and certainties about the superiority of “normal” ways of experiencing the world.  I did appreciate ISPS 2015 as one place where multiple views were considered, and my hope is that as we continue to dialogue, within ISPS and MIA and elsewhere, new ways of accomplishing the vision I have outline will emerge and will then increasingly reshape mental health practice, which is still so badly in need of a “non-violent revolution.”

Developing a Compassionate Voice as a Step Toward Living With Voices

I’ve previously written about the possible role of compassion focused therapy in helping people relate better to problematic voices, in my posts Could compassionate self talk replace hostile voices?Feed Your Demons!, and A Paradox: Is Our System for Responding to Threats Itself a Threat?

I’m happy to see more interest being taken in this kind of approach, and a video has just become available which, in 5 minutes, very coherently explains how a compassion focused approach can completely transform a person’s relationship with their voices and so transform the person’s life!

The video is an animation developed by Charlie Heriot-Maitland working with Eleanor Longden and Rufus May who do the voiceovers.  Check it out, let me know what you think:

(You can also go straight to www.compassionforvoices.com and give feedback to the people who made the video.)

Listening for the Person within “Madness”

As we struggle to invent a humane approach to the extreme states that get called “psychosis” or “madness” or “schizophrenia,” it may be helpful to investigate some of the better approaches developed in the past.

While these approaches are not without their flaws, they are often surprisingly insightful.  (It can also of course be depressing to notice how truths once more widely known were so easily “forgotten” as compassionate approaches got ditched in favor of the latest coercive innovations.)

One of the pioneers in actually listening to those in extreme states was Frieda Fromm-Reichmann.  She advocated assuming that every communication from those in extreme states contains meaning, and for appreciating that there is an “ego,” however beleaguered, within even the seemingly “hopelessly deranged.”  She believed that if therapists would persist in reaching out, while respecting the person and his or her struggle, then communication would gradually become clearer, and the person’s special perspectives and talents could emerge and flourish.

Fromm-Reichmann is perhaps best known as being the therapist for Joanne Greenberg, who wrote a fictionalized version of her story of psychosis and recovery in the novel “I Never Promised You a Rose Garden,” and whose story was also covered in Daniel Mackler’s documentary “Take These Broken Wings.”

One person who has extensively studied the work of Fromm-Reichmann and others like her is Ann-Louise Silver, MD.  In the short clip below, taken from the “Broken Wings” documentary, she contrasts the kind of recovery that can come from psychodynamic therapy with what happens when people are offered what she calls the “scotch tape” approach of medication:

So how does this psychodynamic approach work, and what parts of Fromm-Reichmann’s approach could be helpful to us as we design alternatives for today’s world?

Ann will address that topic at an ISPS online meeting on Friday 2/13/15, at 3 PM EST.  This meeting is free to ISPS members, with a donation of $5-$20 requested from others, though there is also an option to register without donating if that works better for you.

You can register at https://ispsonlinewithann-louisesilver.eventbrite.com

Ann will also be a keynote speaker at the ISPS International Conference in NYC March 18-22, 2015.

Ann was the first president of ISPS-US, an organization started by people who were mostly psychodynamic therapists.  This organization has since broadened, as awareness increased about the need to collaborate with those who have lived experience, and as knowledge expanded about the effectiveness of other kinds of approaches, and of the need to have different approaches available for people who may respond better to something other than long term therapy.

It certainly isn’t too late to register for http://www.isps2015nyc.org/ where you can hear from leaders such as Mary Olson (of Open Dialogue), Aaron Beck and Tony Morrison (of CBT and CBT for psychosis), and of special importance, lots of people with both lived experience of psychosis and expertise in other areas, such as Ron Coleman, Pat Deegan, Noel Hunter,  Sascha DuBrul, and Oryx Cohen among many others.

I will also have a presentation there, titled “Admitting Uncertainty about “Illness” and “Reality” is Essential for Dialogue.”

Of course, many of you aren’t going to be able to attend big conferences like this – which is why I hope to keep working with others in ISPS to make available online meetings, accessible to all, which give people a chance to hear from leaders in our field in a live format that includes interaction with the audience.  Expect to hear more about these meetings on MIA, and/or you can always hear about what’s coming up by going to http://isps-us.org/blog/online-meetings/

Finding the Gifts Within Madness

When people are seeing the world really different than we do, it’s often reassuring to think that there must be something wrong with them – because if they are completely wrong, or ill, then we don’t have to rethink our own sense of reality, we can instead be confident about that own understandings encompass all that we need to know.

But it can be disorienting and damaging to others to have their experiences defined as “completely wrong” or “ill.”  And we ourselves become more ignorant when we are too sure that there is no value in other ways of looking or experiencing.

In a practical sense, there are often many ways for example to look at a particular object – we can look at it from various angles, and through different lenses for example, and what we see will be different depending on how we look.  In that sense, it’s actually ridiculous to see one way or another of looking or experiencing as “wrong” or “sick”; instead, it makes more sense to understand that different ways of looking may be useful for different purposes.

Looking at things the same way as others around us are looking at them can certainly be helpful if we want to understand what others are seeing and to coordinate with them.  Looking at things in more unique ways may be more helpful though if we have other purposes:  for example looking at part of a tree through a microscope may be very helpful for some purposes, even though it is unhelpful for seeing the tree in a conventional way.

In a fascinating recording titled OF MADNESS AND MAGIC: SHIFTING THE LENS TO UNDERSTAND THE MIND, Mischa Shoni shares both her own journey and also some great insights into how discovering new ways of looking at the world, or new “lenses” to look at it through, can be both disorienting and disabling, and then eventually enriching once one learns how to use those lenses in a good way.

Here’s the written description of her talk:

What differentiates what is labeled as mental dysfunction—mania, psychosis, seizures—from what is magic, spirit, or simply … beyond the scientific method? Mischa Shoni embarks on a journey to understand her own brain. On the path, she meets dragons, gryphons, crystal-eyed snakes … and some extraordinary people who see the mind beyond the limited lens of psychiatry.

[click to continue…]

Understanding Psychosis and Schizophrenia – A Valuable, and Free, Online Report

What would happen if a team of highly qualified psychologists joined up with a team of people who knew psychosis from the inside, from their own journey into madness and then recovery – and if they collaborated in writing a guide to understanding the difficult states that get names like “psychosis” and schizophrenia”?

Well, you don’t have to wonder anymore, because the result was just published a couple of days ago in the form of a report that is free to download at Understanding Psychosis and Schizophrenia

A fundamental point made by the report is that “‘psychotic’ experiences are understandable in the same ways as ‘normal’ experiences, and can be approached in the same way.”

I believe this report will be useful to a great many people, because of the way it combines a thorough knowledge of the science with common sense and perspectives drawn from actually listening to people who have had these experiences and then have made sense of them for themselves.  The knowledge in this report will likely both change the perspective of many professionals, as well as be of assistance to many individuals and families who want a deep understanding of the subject that is also  very accessible and easy to read.

It includes  a list of resources at the end which many people may also find helpful.

Jacqui Dillon, Chair of the UK Hearing Voices Network, was quoted as saying:

This report is an example of the amazing things that are possible when professionals and people with personal experience work together. Both the report’s content and the collaborative process by which it has been written are wonderful examples of the importance and power of moving beyond ‘them and us’ thinking in mental health.

I fully agree.

Going Deeper Into “Madness” with ISPS: Anticipating the International Dialogue in NYC 2015

As awareness spreads about there being something wrong with existing approaches to “psychosis” aka “madness,” interest grows in exploring what to do instead.

One interesting meeting place for exploring “what to do” will be the ISPS conference in NYC in March 2015, which is titled “An International Dialogue on Relationship and Experience in Psychosis.”

This conference promises to stand out in terms of the variety of voices,  perspectives, approaches and traditions that it will bring together to focus on the deeper issue of how helpers can best understand and interact with those experiencing what is called psychosis.

I’ve been a member of ISPS (The International Society for Psychological and Social Approaches for Psychosis) for many years now; I currently serve as chair of the education committee for the US branch of ISPS and I’m the lead moderator for its US list serve.  What keeps me interested in this group and its discussions is the focus on understanding psychosis in depth, the willingness to look at it from a lot of angles, and the interest in service models that address the true complexity of the issues people face while maintaining hope for understanding and integration, not just the suppression of unwanted experiences.

In some important ways, the subject of how to make sense of psychosis cannot be separated from the subject of how we make sense of our own existence at its deepest levels.  Often it seems there are a wide variety of possible ways to make sense of things, but then there is the challenge of how to make sense of all these possible explanations and perspectives, and how to talk to each other so that we can share our experience and work together in various ways.  This problem can exist at various levels:  within and between the “parts” of an individual mind, between an individual in crisis and someone trying to help that individual, and between and amongst all those who together form a mental health system or even a culture, etc.

The best approach to these potentially bewildering and overwhelming issues seems to be dialogue, a dialogue which doesn’t determine any final answers, but does improve relationships at various levels, and encourages multiple approaches to understanding.

I value the dialogues I have found within ISPS:  these dialogues have allowed me to improve my understanding of madness and to increase my ability to communicate what I understand to diverse individuals and audiences.  I think if we are ever going to shift society and the mental health system into a wiser approach to extreme experiences, we all need to find such opportunities for dialogue so we can hone our ability to connect with people coming from a variety of different backgrounds and levels of understanding.

The international conference in NYC aims to compress a lot of such dialogues into just a few days!  This conference will bring together not just people from all over the world but also people holding a wide variety of perspectives:  psychiatrists, other mental health professionals, people with lived experience,  family members; and people from schools of thought as varied as psychodynamic, CBT, Open Dialogue, Art Therapy, the Hearing Voices Movement, and biomedical perspectives.

[click to continue…]

Why “Stabilizing” People is Entirely the Wrong Idea

If human beings were meant to be entirely stable entities, then “stabilizing” them would be an entirely good thing, a target for mental health treatment that all could agree on.  But it’s way more complex than that:  healthy humans are constantly moving and changing, they have a complex mix of stability and instability that is hard to pin down.

All this relates to one of my favorite subjects, the intersection of creativity and madness.

It is a curious fact that people seen as “psychotic” or “schizophrenic” may show sometimes more creativity, and sometimes less creativity, than “normals.”

A good example of this was a test done to see how

people “guess” which of two alternatives (e.g., “left” or “right”) will occur next, when in fact the order of outcomes is random. We can analyze the sequence of guesses and quantify their entropy (unpredictability). Healthy people tend to have a Gaussian distribution of sequential guesses, with most responses at intermediate levels of entropy, and fewer very redundant or very entropic responses. In contrast, people with schizophrenia tended to show both more redundant (predictable) and more entropic (unpredictable) responses; longer periods of predictable behavior were interrupted by very unpredictable behavior.

That comes from an interesting little article, Creative cognition and systems biology on the edge of chaos .

What the guessing game test, and other research tends to show, is that people diagnosed with psychosis are often both too “unstable” at times, but also overly stable at other times (actually more of the time.)  This corresponds to the way people experiencing “psychosis” can be both very flexible and innovative in the way they understand things, and also often very rigid and uncreative in other ways or at other times.

When I was a young guy going through a somewhat “mad” period, I identified as being very creative, while I saw “normals” as being more like robots or insects or something.  The truth at the time was that I myself was often too much like the robot or whatever – I would fall into ruts or various sorts of “false selves” that weren’t very connected with anything alive within me, and then here and there I would be very weird or random in efforts to break free of those ruts.  [click to continue…]

Does Long Term Use of “Antipsychotic” Drugs Result in More Disability, and More Psychosis?

This sounds like a weird question – everyone knows that psychosis is often very disabling, and antipsychotic drugs are widely recognized for their effects in reducing psychosis in at least most people, and most often taking effect in just a few days.  And when people become psychotic again, it’s often understood that it’s because they “weren’t taking their meds.”

But what if it’s trickier than that?  What if “antipsychotic” drugs make things better in the short term, but make long term problems worse?  How would we even know?

In a recent letter to the Psychiatric Times, psychiatrist Sandy Steingard outlined some of the ways we can know that there definitely is a problem with the long term use of antipsychotics.  (Note that while she addressed a limited number of studies, that’s just because there actually are very few studies which look at really long term outcomes.)

She started her letter by writing about the Wunderink study, which found dramatically higher rates of recovery among the group that had been randomly selected 7 years earlier to receive a trial in getting off antipsychotic drugs, compared to those maintained on the drugs as usual.

It should be stated that the results of the Wunderink study are not perfectly clear in all respects.  For example, of the members of the group that guided discontinuation of the drugs, most had resumed taking at least some drugs over time, though the dosages on average were much smaller than those of the “treatment as usual” group.  So some have argued that the positive effects might have come from lower than average doses, and they argue that the study should not be taken to indicate that any use of drugs is detrimental long term.

But Sandy brought up more evidence, and the case against long term use of antipsychotics became more convincing as she continued. [click to continue…]

How Can Professionals Learn to Reduce Fears of Psychotic Experiences Rather Than Emphasize Pathology?

The kinds of experience we call psychotic are often incredibly scary: people feel they are being persecuted by strange forces, or that their brains have been invaded by demons or riddled with implants from the CIA….. the list of possible fears is endless, and often horrifying.

While standard mental health approaches counter many of these fears, they often create new fears of a different variety.   People diagnosed with schizophrenia for example may be led to believe that they will definitely be mentally ill for life, that this illness controls what happens in their brain and not themselves, and that there are few or even no alternatives if drugs don’t work for them.

This can be extremely demoralizing.  Oryx Cohen graphically described his own reaction to the standard mental health psychoeducation he received after his first psychotic experience:  he reported it made him feel he had lost his membership in the human race!  As a result of it, he felt caught up in a pathologized understanding of himself, he lost his expectation of being capable of learning from experience and shaping his future, and he now felt defined by his abnormality rather than by his humanity.

Despite rather than because of what the mental health system taught him to believe, Oryx later discovered other ways of understanding his experience, and he made a full recovery.  But wouldn’t it be better if people like Oryx were helped to find a more humanistic understanding of themselves within the mental health system and from the very beginning of treatment?

Wouldn’t it be helpful if professionals were trained in an approach that could help people shift away from both dangerous psychotic ways of thinking and also away from the sometimes equally terrifying explanations which emphasize pathology?

Further, what if such an approach could also build a foundation for learning effective coping skills, and also help a person build hope and a road map toward a possible full recovery?

And wouldn’t it be nice if this approach was already proven to be “evidence based” so that both people learning the methods and their supervisors and colleagues could have confidence in its effectiveness and safety?

Fortunately, at least one such an approach exists, and it is called CBT for psychosis.  This method allows professionals to collaborate with people in developing understandings of their psychotic experiences that neither minimize problems nor emphasize pathology, but instead help make sense of extreme human experiences in a way that is grounded in more everyday human experience and issues.

And better yet, those of you who are interested don’t need to go out and buy something, or travel to a seminar somewhere, in order to learn this method:  instead, an online training module on normalizing is now being made available, for free!*

To access this training, I’m asking that you first register with my email list at this link, then you will be instructed how to sign up for the training module itself.

Here’s an outline of what you can learn from participating in this training module: [click to continue…]

CBT for Psychosis, and the Hearing Voices Movement – Can They Be Friends?

Doug Turkington

Doug Turkington

When Doug Turkington, a UK psychiatrist, first announced to his colleagues that he wanted to help people with psychotic experiences by talking to them, he was told by some that this would just make them worse, and by others that this would be a risk to his own mental health, and would probably cause him to become psychotic!  Fortunately, he didn’t believe either group, and in the following decades he went on to be a leading researcher and educator about talking to people within the method called CBT for psychosis.

I’m writing about Turkington because I just spent a week learning more about CBT from him at a training in California.  This training was part of a bigger effort to bring this psychological approach into wider use in the western US.  Attending this training and seeing the interest and passion in those who attended got me reflecting on what the role of CBT might be in changing our mental health system overall.  A key question related to that, it seems to me, is the question of how CBT can improve its relationship to another key change effort in the field of psychosis, that of the Hearing Voices Movement (HVN).

I have a lot of interest in the possible improvement in that relationship between CBT and HVN, because for quite a while I have had my “feet in both worlds.”  My first involvement with the mental health system was as an activist for change and increased choice, then I became a mental health professional so I could work to provide some of the alternatives I believed should exist.  The first alternative approach to voices I heard about was the CBT approach of Paul Chadwick, so I started with that, and went on to become a CBT practitioner and educator.  Then, when I heard about the HVN, I adopted many of its ideas as well, arranged for Ron Coleman to come to my town of Eugene Oregon to do some trainings, and got an HVN group going here.

While I have always interpreted CBT for psychosis in a flexible way, integrating it with HVN ideas, I have sometimes been unsure how well that would fit with the approach of the CBT for psychosis establishment.  So it was really interesting to spend a week with Turkington, and to have a chance to explore his views in depth.

According to Turkington, the very most important part of cognitive therapy for psychosis is “normalizing” which means framing psychotic experiences as understandable and as just a fairly common variation of normal human experience and issues.  This includes talking with people about how to get past fearing or “catastrophizing” such experiences, and even how to see them as possibly valuable, for example by seeing how such experiences can be part of a creative process or of a shamanic journey, etc.  I have always been open to talking about this positive, somewhat shamanic side of psychotic experiences, and discussion of such views is common within HVN, but it was nice to see Turkington teaching this approach as part of standard CBT for psychosis! [click to continue…]

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