Before I get into this more tangibly, I want to clarify that I never intend to make the claim that “I know what would work” or that “I know the way” or that “I blame the institution of medicine for the harm that some incur by engaging with it”. The point that I hope to articulate can be summarized by the following:
Nobody knows (probably) the relative answers to the ill-defined problems that intractable suffering and existential anomalies elicit. I think it would be helpful to acknowledge this unknown terrain so that decision-making powers are not asymmetrically distributed across agents(ex. psychiatrists enact power over others even when clinical uncertainty is extremely high), when the conditions are such that all agents have the same/symmetrical lack of insight.
In light of extreme uncertainty in the case of the chronic catatonic psychosis that my brother experiences (discussed below), institutionalized and bureaucratic entities such as the mental health system are poorly positioned to be useful in his case. My views are informed by my obvious personal experiences in this domain, and also by my professional experiences working in partnership with individuals who are typically constrained (in one way or another) vis a vis the psychiatric or developmental bounds that authoritative professional entities have inscribed upon them. I am willing to wager that, in cases of increasing clinical uncertainty, most institutions of medicine have become so paternal to the extent that, in the name of “keeping people safe”, they are actually perpetuating stagnation and barring many from the pursuit of health, happiness and wellbeing.
In light of this, spaces that employ methodologies endemic to things like engineering and designing, making and tinkering, seem like they could be much more useful here. Again, I don’t know anything for sure, but comparatively, there are some fair claims that I think I can make, and I would risk everything (and be fully responsible for future failures should they happen) to allow for Jules to have the opportunity to try to address this issue some other way. He was recently re-hospitalized after nearly succeeding in taking his life, and in my view, fear of imprisonment was ironically one of the factors that informed his actions.
10 years of the mental health system has resulted in an acceleration of harm to an unconventionally intelligent, deeply honest and wise, compassionate human being. If he were more dishonest, he’d probably fare better in this system, but he is interested in no such social games, and I've never known him to be willing to represent himself in ways that are not true to his internal experiences. His honesty and his deep awareness of suffering (in himself and in all forms of life) are the qualities that both a) attract others to him and b) result in enormous bidirectional fear and hostility when those values are violated. As we know, we live in a deeply imperfect and ignorant world, one that struggles to understand and connect with people like my brother.
My Perspective regarding the problems that need to be addressed:
At the Individual Level:
Experiences of chronic (almost absolutely unremitting) suffering related to auditory verbal hallucinations that are high intensity/frequency and malevolent in nature, cognitive and somatosensory disorganization, lack of ‘normal’ perceptual filter, difficulty or inability to connect with others and the external world outside of his thoughts (presumably due to the relative “volume” of his internal world compared to the external one)
Interaction between Individual and Social Levels:
His extreme distrust and externalized hostility is positively reinforced by (and in turn reinforces) the tendency of other people (usually medical professionals) to control, judge, “help” via coercion, infantilize, “benevolently other”, lie to, disrespect, and/or manipulate him
Social Level Issues:
The psychiatric institutional enterprise is deeply flawed in practice, and in many of the theories (and ways of thinking about these theories) upon which it is inspired.
In the past 10 years, he has been forced to involuntary hospital stays for about 7 (of those 10!) years*. It appears to have had the following impact:
- **At best, prevented some unknown harm from occurring in the first place.
- Come at his extreme detriment and the detriment of others in the family. He has experienced:
- Coercion and constraint (in the form of physical, cognitive, social, economic, spiritual loss of freedom)
- Active application of bioactive substances that have resulted in physical harms that outweigh ‘supposed’ benefits (those of which are none for him since his psychosis is 'treatment-resistant').
*He has never committed any crime, violent or otherwise, and there is not a lawful grounds for having forced this upon him. I will concede that the reasoning behind this near prison sentence probably comes from some kernel of reasoning: though he has never actually enacted violence (some minor physical aggression toward household objects and rarely, people, but never intentional assault), his anger, hatred, and fear is extremely palpable (and to many--including myself at times--it is viscerally frightening). It should also be noted that part of his hostility likely comes from a long history of being disrespected, infantilized, coerced, and traumatized by so many people (professionals, family, friends, and strangers alike).
** This is on par with the oft cited analogy of staying at-home on your couch all day in order to avoid some unknown, untimely death that you could incur, should you step outside into a more unpredictable world. And what kind of life would that be?
Iteratively [design, test, analyze, learn]repeat ‘treatments’ on our own, with those technologies and other tools that we can strategically access.
Much of the clinical world refuses to even consider some of the options that we are toying with (due to some faulty conclusions/dogmatic thinking related to the view that “schizophrenia” is somehow fundamentally different from all other human conditions, and as such, should be treated differently)
Materials and Methods:
- These consists of psychopharmacological and neuro-technological hard and soft tools that we think could be beneficial.
- All experimentation would be designed, implemented, and subjected to mixed-methods data collection and analysis in equal partnership with my brother. This means that he does not expose himself to anything that I do not also expose myself to. We would be applying these tools and methods to ourselves, together.
- These tools all fall under the purview of “cognitive enhancement”.
Amphetamines, empathogens-entactogens (MDMA), methylphenidate,
tDCS (transcranial direct current stimulation), tACS (transcranial alternating current stimulation)
Neurofeedback hardware and software such as:
EEG-based hardware with EEG-input--video-output software built on top that is sensitive to upward changes in activity in the parts of the brain that are thought to be related to sustained attention, conceptual analysis and synthesis, etc AND the parts of the brain thought to be related to language acquisition, encoding, and conceptual representation.
I am working on a more descriptive outline that includes a scoping literature review, theoretical proposal/hypothesis, and that explicates the materials/methods that one might use to test such ideas/hypotheses.
As far as I’m concerned, being/becoming human is just one long series of experiments over my/our life course, and I feel pretty strongly that it’s time I act accordingly.
I deeply appreciate any ideas, feedback, strengths/limitations, opportunities for development, and/or risks that you can think of with respect to any of this. I recognize that some appraisals of this may be negative, and that is okay. I am not a perfect thinker or doer and the truth really is that I have no idea what is happening so much of the time, but I am really okay with that. As long as we’re all in this experiment together, and as long as we concede the point that we basically all have the same potential: to deliver good ideas, bad ideas, and everything in between...that kind of interaction and sense-making is priceless.
Thank you for your consideration and your help,