Is your brother in the hospital now? If so, do you have a plan for getting him out?
You might also want to talk to a lawyer to better understand the standards for involuntary psychiatric commitment, your legal options, such as guardianship, and your potential liability for attempting treatments which your brother perhaps cannot consent to, and some of which involve illegal drugs. Are your other family members on the same page?
If I could write an action plan for you, it would go:
It seems to me like the tool you want to use is to give him other drugs and interventions and physical interventions on his brain.
I would likely mix somatic interventions like Feldenkrais that give him perception of his body so that he has something that grounds him in relation to his hallucinations with mental self-identity finding (Transform Your Self by Steve Andreas).
But I haven't worked with a person with a similar mental health background as your brother (this is not medical advice).
Hi Christian,
Thank you for these pointers. I had not heard of the Feldenkrais Method, and I definitely feel like integrating intentional physical movement and breathing would be necessary to becoming aware of the somatic context within which mental self-identification emerges...when reflecting on my own habits with respect to this, I am realizing how critical my own habit of going running is, to my ability to function...
I was reading Nassim Taleb recently, and the idea of biophysical fitness (or fitness in general) seems to me to relate to this idea of&quo...
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:
*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?
Proposal
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:
Psychopharmacological
Amphetamines, empathogens-entactogens (MDMA), methylphenidate,
modafinil, etc..
Neurotechnological
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,
Sara