If someone you loved was experiencing unremitting suffering (related to a constellation of multi-dimensional factors and processes, those of which include anomalous states of consciousness and an iatrogenic mental health system), what would you think and what would you do?

post by Sara C (sara-catanese) · 2020-07-03T21:02:34.930Z · score: 18 (7 votes) · LW · GW · No comments

This is a question post.

Contents

  At the Individual Level:
  Interaction between Individual and Social Levels:
  Social Level Issues:
  Proposal
  Materials and Methods:
          Psychopharmacological
           Neurotechnological
None
  Answers
    3 remizidae
    2 ChristianKl
None
No comments

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:

  1. **At best, prevented some unknown harm from occurring in the first place.
  2. Come at his extreme detriment and the detriment of others in the family. He has experienced:
    1. Coercion and constraint (in the form of physical, cognitive, social, economic, spiritual loss of freedom)
    2. 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?

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:

  1. These consists of psychopharmacological and neuro-technological hard and soft tools that we think could be beneficial.
  2. 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.
  3. These tools all fall under the purview of “cognitive enhancement”.

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

Answers

answer by remizidae · 2020-07-05T11:25:41.683Z · score: 3 (3 votes) · LW(p) · GW(p)

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?

comment by remizidae · 2020-07-05T11:41:05.803Z · score: 3 (3 votes) · LW(p) · GW(p)

If I could write an action plan for you, it would go:

  1. Get family members, you, and your brother on the same page
  2. Get brother out of hospital (perhaps by convincing him to conform for a while, perhaps via a lawyer). Of course, don’t take this step unless you have a plan for his care. Can he live with you? Are you willing to be his caregiver? What happens if he attempte suicide again or does something else that would legally warrant commitment?
  3. Is there a local Hearing Voices group? Or research Hearing Voices online. Lots of people have experience with living with the experience of hearing voices while managing the distress and disruption they can cause.
comment by Sara C (sara-catanese) · 2020-07-07T16:22:57.201Z · score: 1 (1 votes) · LW(p) · GW(p)

Hi remizidae,

Thanks very much for your response. It is really helpful for me to have action items/relevant questions laid out, so again thanks very much. In answer to your points and questions:

1. My perception is that my other family members (other brother, mom, and dad) acknowledge that going through the same cycle of crises and downstream coercion that functions such that the outcomes then feed into the re-emergence of more crises, etc, is unhelpful (at best). I think though, that my family feels "at a loss" for how to move forward, given that a) my family is slightly fragmented and there are some persistent communication/power/ego issues, b) family lacks access to structural resources ($$ and time) c) some family members have personal demons of their own (not that this is different from fundamental human issues that we all face from time to time, but some of the problems can be pretty pervasive and it gets in the way of being able to support others in the family).

My brother is on the same page in terms of the general idea of a) not seeking to solve his problems via direct antagonization of neural processing networks in his brain. In the past, he regularly talks about not eradicating voices, but rather needing to re-relate to them..etc) b) achieving problem mitigation indirectly vis-a-vis increasing biophysical and cognitive "fitness". He's always been very pro-cognitive enhancement/cognitive liberty, and I'm right there with him. Also, right now, his individual issues are arising from more than just malevolent voices. There's a big de-centralization/cognitive fragmentation aspect to it that I think it making it difficult to experinece any volition at all (which then makes dealing with commanding voices that much more complicated) I think that issues typically tend to arise during interactions with doctors who are uncomfortable with this and who may impose their own values and judgments onto a decision-making encounter...which then renders the whole interaction totally asymmetrical which is not productive

Over the years, many variables and iatrogenic interactions seem to have gotten us to a place where my brother regularly experiences the sort of cognitive disorganization that makes it really hard to coherently analyze and synthesize ideas, and to then verbally represent and communicate things to others...he also seems pretty primed to perceive incoming communications as antagonistic and hostile (understandably so, given his history), so it's been difficult at times to overcome the hostility/aggression factor, but I think we have a connection where it's possible to do that in the 9.5/10 cases when it comes up in a big way.

2. Yes--getting him out of the hospital right now, is, I think the limiting reactant..I'm trying to work with his doctor/social worker to start prescribing a low dose stimulant because I think that would really help with a)combatting the cognitive deficits that anti-psychotics give rise to for him and b) helping him to be more conceptually agile and to remember things that we discuss (strategies moving forward, etc).

He can live with me, but depending on where he's at he'll sometimes prefer to be at my Dad's. Between the two of us, we can make it work, I think we just have to plan ahead more strategically in terms of having the time and resources that we need in order to de-escalate crises should they come up...Lately, I have observed that my brother seems to be explicitly more hostile toward women...not sure exactly if it's a thing or not, but I get the sense that he's s agitated by the threat of potential coercion because he's experienced it so much, that maybe he thinks you either have "to overpower" or "be overpowered". It doesn't bother me because I honestly think the risk is low, and even if it's higher than I think, I don't particularly care. Neither my Dad nor myself have pushed guardianship out of the sense that it would be felt as offensive or infantilizing on my brother's end, but I think that you're right for legal reasons it could be in his best interest. I wonder if it were framed as "guardianship of personal freedom" if my brother would be more inclined to feel good about it. With respect to the legal implications of using psychopharmacological substances without a doctor's prescription: ideally one would be able to find a licensed practitioner to collaborate with, but having tried to find this for a long time, I think it's time to cut our losses and get things done. In my view, doctors are only relevant to this insofar as legality goes. In theory, they are not necessary or essential to acquiring, responsibly testing &carefully using high quality tools/methods. Yes, it might technically be 'not legal' at this time, but the legal system is far from ideal and at the end of the day, I would have more issues answering to myself if I failed to take the risk

3. I have some peripheral involvement with Hearing Voices communities in the area which I had moved towards in years prior because I thought it was/would be really relevant and useful--thank you for bringing it up. I think the ideas that underlie and are produced by the HV community are applicable to a lot of the existential issues that we all face. My brother has sort of engaged with the values and ideas of that community....I think in terms of engaging with people, he's been wanting to re-connect with himself and old friends, so maybe it has something to do with his de-prioritization of this community? Regardless, I really agree with you that it can be really useful.


Thank you again for your input and sorry for the mini-novel. I really appreciate your ideas and your time and thank you for getting me to think.

Sara

answer by ChristianKl · 2020-07-04T11:19:23.501Z · score: 2 (1 votes) · LW(p) · GW(p)

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).

comment by Sara C (sara-catanese) · 2020-07-07T17:15:25.676Z · score: 3 (2 votes) · LW(p) · GW(p)

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"becoming anti-fragile". I think, when faced with health issues or the potential for health issues, mainstream epistemic narratives imply that we should seek to create predictive models that focus on antecedents of said health issues, with the teleology being that 'knowing the etiology' could help one to reverse or avoid the initial events that lead to harm. Taleb's view on this (from what I may understand) is that this idea of etiology is not necessarily something that is comprehensible given the way that non-linear dynamic systems function. According to him, rather than focusing on factors that one cannot predict, it is more useful to engage in actions that increase resilience/fitness so that if unpredictable exposures that are potentially harmful, do interact with some entity, the impact on that entity does not reach a tipping point where it functions such that net, chronic harm, is emergent. See the section titled "148 The Central Idea: the conflation of event and exposure, or difference between f(x) and x" for a mathematical framing of this idea

comment by ChristianKl · 2020-07-07T20:18:51.107Z · score: 2 (1 votes) · LW(p) · GW(p)

Breathing has it's positive effects on some issues, but it doesn't build general perceptive awareness. Part of what makes breathing a tool to deal with an emotion like fear is that it's harder to feel the fear and the breathing at the same time. 

To build general perceptive awareness slow movement that's exploritive in nature instead of focused on having to express a fixed form, seems to me the way to build it. There are a variety of methologies that do this and somatics is a term coined by Thomas Hanna for them.

There are claims in Korzybski's Science and Sanity (the book that coinend the map is not the territory) that schizopheria is due to dealing to much with abstraction instead of base reality and that conflicts of abstractions are partly the cause of the problems.

Steve Andreas makes a more specific claim that schizophrenia often comes with schizopherics having a self identity of not having quality X, Y and Z instead of positively having specific qualities. 

Those neurolinguistic approaches don't have peer reviewed evidence to back them up as they aren't studied by academics but they have a community of practice behind them. 

This kind of work is also likely benefitial to becoming less fragile in Taleb's sense. 

One word of caution: If you help someone to feel their emotions better, they can have an increased sense of agency in a state where they also feel strong negative emotions. So it's good when they have a stable enviroment around them.

From a more Talebian perspective I wouldn't expect modafinil and MDMA to increase resilience. 

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