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HOPE: On the Other Side of the Door

Dec 27, 2018

This is first talk on the Schizophrenia Care Project.  The theme will be the project’s goals, vision, sub-parts and mission.



First language and “words” were discussed.  There is a theory of human communication that holds that the words we use have an impact on our sense of identity, our place in the world, our self-esteem and things of that nature.


The word “psychosis” was reviewed in some detail.  It is a medical word, a jargon, a technical word.  Psychosis is a word like the word “fever.”  It describes a set of experiences, reported perceptions / senses and observed behaviors.  Just like “fever” the medical word “psychosis” does not imply or define a specific diagnosis.


Of considerable interest are those reported perceptions,  experiences of the person having them,  that are not shared with others in the immediate vicinity.  Some would classify ESP, extra-sensory perception, clairvoyance, and such as hallucinations.  Hearing the voice of “God” as some religious mystics hear is also in this category of an experience that is not shared by others in the same room, or right nearby.


Regarding disease or pathology, the definition of schizophrenia as a phenomena was reviewed.  It is also in the PDF report available at the website.


Some religious and spiritual systems include experiences that could be termed hallucinations and delusions.  For those appropriate sub-cultures, this is not a problem, not an illness.  Religious  experiences that occur in those accepting group settings, that is in a church or spiritual community, were not considered to be part of illness.  Examples were given.


So, one might conclude that a certain sub-set of fevers or of psychotic experiences can be part of the normative human life.  It leads one to a question.  What can the family, the community, and the mental health practitioners do about this. 


The  World Health Organization studies of those with a schizophrenia diagnosis were discussed.


Narrative reframing and motivational interviewing were both discussed.   The  group called the “Hearing Voices Network” which exists as part of the “Hearing Voices Movement” seeks to raise awareness that there unusual experiences in any of the five senses, are not in themselves pathological, and do not immediately qualify as a diagnosis of schizophrenia.  They aim to re-define the “psychotic experiences” of their members and normalize them.  They generally avoid the word “psychosis.”   Indeed, severe mental illness had carried strong negative connotations and negative associations both in our Western and American culture, and results in unnecessary suffering on the part of some people who are living with such symptoms, diagnoses, and labels.



The SchizoPhrenia CARE Project is an umbrella for several things, first is this podcast aimed at educating and supporting the caregivers of some loved on who is living with schizophrenia or who is “hearing voices.”


Next, the project is a platform for written educational material, including periodic newsletters, and an initial book on Hope and advice for the caregivers to find a foundation of support in their own lives so that they may more effectively care for the loved one living with schizophrenia or “hearing voices.” 



Online support groups are another spin off of the podcast and SP CARE project. Dr Ken envisions both moderated and unmoderated purely peer led groups for empowering the caregivers.  Additionally, the is to be a private level support and empowerment group. Accountability and support to implement the practices of both self-care and new ways of supporting their loved one who is living with a diagnosis of schizophrenia or who is “hearing voices” is the key here.  The word “eccentric” was reviewed and discussed, too.


Dr Ken reviewed some of his hospital based experiences, too. Like aspirin or tylenol for a fever, the acute use of the dopamine blocking medications, the anti-psychotic medications is a very humane thing to offer.  Despite the importance of self-determination, there also exists a group of people who are at risk for sever or damaging consequences of their unusual experience as well.  This smaller group is the set of people who require a paternalistic intervention with the use of anti-psychotic medications for the short term at least.  Safety is key. 


Lastly the residential care part of SchizoPhrenia CARE project was discussed. “New Hope Campus - with the neighborhood or city name attached”  are the names of such houses. The goal here is to help people with supportive, holistic and well staffed group home for long term residence.