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  Silje shared what began as a very dark story, about her being bullied as a child, then becoming extremely withdrawn, suicidal and “psychotic,” then being hospitalized for years without hope for anything better.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Silje shared that even in her withdrawn state she had a definite sense that in order to reconnect as a human being, she was going to need physical affirmation and touch from someone outside her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 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.”