[Question] 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?

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

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