Showing 49 of 49 comments.
Would have liked to have heard more from Robert himself in this interview.
Oh, I found that comforting. The first part seemed too fluffy, biographical and geographical, the mid section too replete with big long words, but later it all got deliciously succulent. I remember a book in a therapists office titled something like “Borderline Personality Disorder, a doctor’s most hated patients”. Maybe it was not called that exactly but something similar.
I think one of the reasons society has an antipathy towards people so diagnosed is that there is a private ironical jealousy of those who smash their wonderful screamy, noisy way to the top of the “love me queue”, the same queue that the whole damn world are ever so obediently and politely sighing in. The in-fighting that broke out in death camps seems to have had a similar ridiculing of intense need. When love becomes a finite, restricted, societal resource, need has to meet rigorous medical criteria and what little love there is has to be weighed and seived through a rule book in order for any apportioning of that love to be “justified”. Certain “camps” of “conditioned masculinity” come across as lacking the food of basic love within such camps, a bit like a “Gulag camp” where the handing out of scarce crusts of “love” first requires frisking the begging, for proof of deservingness. Merely wanting love or even needing love is regarded as aberant in an aberant camp, like whinging and moaning and wanting or needing a bowl of scarce oatmeal that nobody else is getting either. Those who legitimately bawl their way to the top table get wrongly deemed to be “scheming” for such oatmeal or love. The mockery surrounding the diagnosis of BPD is a sign of societal starvation.
On another tack, I rather like Adam Jukes and his book “Why men hate women”. It came out in the early nineties I think. He is a British psychotherapist who made hay with Freud. He did a nice youtube on the topic of “sulking”.
Beautiful, illuminating dignified, comprehensive response.
Have you considered becoming an alternative health practitioner? You would be great at it I feel.
If I might puff on my peace pipe and pontificate and offer my own appreciation with good intentions here, I would say that I see that for you there are three enemies.
1.Your life erroding lyme disease illness. 2.The cruelly negligent yet bullying doctors.
3.The indifferent, callous, stupid and easily duped society, who defend such doctors rather than your truth.
In the midst of it all you are a warrior spinning around trying to thrust the dagger of your honesty at all these enemies to defeat them. But no sooner do you floor one of them then the other two pop up to squash you into “their” idea of the truth you suffer. And so you feel determined to crush “their” uninformed, uneducated idea of you, since all of these three enemies are combining into a big destruction of your need to not just survive but blossom in good heath. So these three enemies combined come to symbolize “death”. And all the paraphernalia associated with these three enemies also symbolizes “death”, such as the language surrounding them, be it medical jargon or societal indifference. The very words linked to these three enemies seem like the calling cards of “death”.
Certain other people may not mind such language and their three enemies might be quite different, such as the enemy of being told they are a bad person for speaking words any way they wish to, which is something my psychosis bullies me to do and insists I do or he will kill me. My warrior moves are more focused on not letting anyone tell me how to think or what words I use. This is very similar to your warrior ways in that both of us champion the ability to assert our truth or experience without any bullying coming back at us. We are both about diminishing the scourge of bullying. It is just we do do in subtly different ways. Ways that may make us seem to one another like the enemy, the indifferent society or a cold logical bickering doctor, or a cruel disease that won’t let up.
What I find best for me is to remain focused not on the paraphernalia or outward signs and symbols of endemic and systemic bullying but rather focus on its hidden pulse. The outward signs that send a shiver down the spine because they have come to resonate in a PTSD flashback startle are probably merely harmless paraphernalia or turns of phrase or language that “trigger” the old memory of approaching “death”. But as any veteran will say the PTSD jumpiness about the battlezone proximity of “death” may just be the harmless thud of a fridge door and not an actual danger like a grenade. Sometimes it helps to rootle around and figure out if something really is an enemy that signals “death” or is just one of the many props or behaviours or dimeanours or words that have come to symbolize it but are not actually the real pulse of bullying. It is clearer to thrash aside the brambles and thorns of symbolic death or the symbolic props a bully may use to intimidate a victim and instead observe the actual bully themselves. Actual bullies are often terribly small.
Must go and eat my frugal food which is growing cold yet again…
Kevin you are an enthralling writer.
The piece is so clever because as older Kevin is rootling around for answers to a lifetime of bewilderment, this brings into focus the bewilderment of young Kevin standing in his parent’s home. That way you get the reader to feel as bewildered as young Kevin.
For some reason I thought about a documentary I saw years ago about an African tribe. In one clip all the adult men troop off with pubescent boys to the forest to turn them into men. I shall not say what the boys were asked to do to “become men” but suffice it to say they looked utterly non plussed. I imagine this sort of multifarous tribal oddness has being going on since the dawn of humanity. Adult parents seem ever wont to “initiate” their offspring into their own myths. In modern society no parent will take their kid into a wood and billow jungley herbal smokes at them to “initiate” them, as if “initiating” is a hurried shove into a stronger safer adult way of facing off the dangers of the forest. But modern kids do get “initiated” into imbibing what their adult parents get prescribed by the pharmacist, and experience the same bewildering shove into adulthood that comes from psychiatric potions. I guess the difference between the boys in the African tribe and the kids who are modern counterparts is that those boys were in an actual “tribe” and so they all had eachother as bewildered “initiatees”. You had nobody.
And hello fellow world saver.
I enjoy you.
Your searching mind is scrupulously thorough. Could say much much much more but it can keep for another time. I am busy today. All I will say is that for me “oneness” is holy. It is my notion that our spirits are all part of beautiful “oneness” and before our births when we incarnate into our fleshy earthly bodies our memories are dialled down about that celestial belongingness. But not so dialled down that we dont have a lingering hunch that connectedness is superfluous. We seek it all our lives. But “oneness” is not about erradicating differences but adoring differences. People get mixed up and think differences are like people shouting “my difference is correct and your diffrence is horrid” and “I am right and you are wrong”. But that is just bad behaviour “overlayed” on top of neutral innocuous triggering differences. All differences are arbitrary and harmless. I am not against difference. And I take delight in allowing myself to be different. And what we allow in ourselves we tend to equally champion in other people. So if I allow my difference without calling it “right” or “wrong”, I am more free about allowing other people to freely love being different from me. I am in favour of difference. I am against bad behaviour. These two things are not the same. There is a subtle felt distinction. I am for everyone loving their unique differences of opinion, faith, ideology, activism, feelings and so on. It is bad behaviour that curtails connectedness. It is bad behaviour that is what unwelcomes the different to stay as beautifully harmlessly different as they choose to be. The different should not be suppressed or vilified or ostracized for ANY reason. Gentle persuasion is okay, everyone thinks their own difference is magic and cannot wait to share its fabulousness. That is fine but rank bullying of other peoples diffence to the extent of demanding that people you have never met have to be all the same as you is bad behaviour. Difference is benign. It is how an observer of a difference gives “significance” and “interprets” a difference, as being right or wong according to their questionable rules or beliefs is where bullying can overlay a difference and abuse can kick off. After that grows a mob punishment of the different for their differentness being deemed “wrong”. Don’t get me started on where such bad behaviour, that favours the “I am right” stance in humans arises from.
But here is a clue…
f e a r
@Kindredspirit, I must say that I am sorry you have suffered from lyme disease and got gaslighted by medical professionals you say and diagnosed as schizophrenic. A misdiagnosis like this which then gives you the wrong treatment can be tantamount to medical negligence. As someone with a friend whose husband died of lyme disease I can appreciate the seriousness of the need to clinch the diagnosis speedily. You should never have been put on vile antipsychotics. I am convinced your pericarditis was likely caused by the neuroleptics but I am no doctor. I got pericarditis from those drugs. I understand how it feels to have your bodily symptoms met with the insistence it is all in your head. It is devastating to call upon medical help and be treated like you are the problem when you are sane and reasonable.
I hope you continue to explore any avenue of proper treatment that will ease your lyme disease.
I won’t get into a chat about mad pride as I do not know much about that movement, so I don’t know what my response would be. But speaking only for myself and nobody else, I feel my madness is the most healing place for me just now. My “mad” is my “well”. I do not especislly want to be encoursged to be anyone elses idea of “well”. I do not enjoy feeling ill and tormented by my schizophrenic intrusive barrages but I am as yet not convinced that these come from brain or mind but from something I call spirit. I do not mean possession or anything like that, even though my hallucinations do imprison me, but that the symptoms of hallucinations come from a weary soul, my own weary soul. My exhausted battling jaded spirit. I do not believe my schizophrenia has a physical or mental cause but is more like “a real disease” of my tired spirit. I have more of an Amazonian tribal Shaman’s outlòok. If anyone were to visit far flung indigenous peoples on our planet, one may find that in the queues to see various Shamans, folks would name their own private bodily or mental ailments according to their personal familiar pet words or choices. An Inuit person might call their hangover headache by a name that a Polynesian person would be appalled at. A Siberian reindeer herder might call their stiff shoulder something that a Cypriot might shudder at. And as individuals, much like children conjure up names for bodily places, we name our own illnesses in whatever way pleases us. It is fine to want people to not use descriptions of themselves that have alot of baggage, but if the person themselves is quite happy to call their illness a name nobody else likes I do not think it is up to anyone else, from Polynesia or Alaska or Siberia or where ever else in the massive world to judge. I do not think a person with lyme disease would welcome a comment that read “I just want to help people realise they have other options for their ‘so called labelled lyme disease’. Really anyone who is an adult should feel unembarrassed to use whatever name they wish for their own body and their own illness or disease. I think everyone has the memo about how the psychiatric system denigrates people by dishing out iffy diagnosises. Those who don’t want to describe themselves in such and such a way need not ever regard themselves in that way. Those who want em can keep em.
But I shall end here. The main thing is you have my sympathy for your having lymes disease.
I am sorry for your loss of your companion.
Aw, Thank you Madmom. I like your comments also. I really do. Thank you for affirming the enmeshment. I am new here so still feeling my way around the volcanic leylines.
I was mulling over today that there is a link between passion and anxiety. You cannot have passion if you are sated and content. Passion is always restlessly searching, looking for the beloved, thinks about him, or her every hour of the night and day, dreams about a triumphant union where a huge reconciling healing of yearning and the anxiety takes place. Activism is passion in action. It is vibrant and energized and beautiful to see. However, it can be so overwhelmed with anxiety at not quite getting the desired for beloved thing, a union of consensus or longed for fresh paradigm of care, that the anxeity tips over into anger and frustration. But in any romance, (and I include activism as a kind of romance of a prospective utopia), such passion that thunders into belicose anger, whilst attractive and stirring in protests, can occasionally start to sound almost as oppressive as the old paradigm. The passionate tend to bear the Olympian torch of a shiny new vision and this is exciting, necessary and thrilling. But I know from times when I have lived in a state of intense brooding passion for change that I become rather bullying of anything that gets in the way of me and my beloved cherished vision or craved over outcome. I find it good to mother my anxiety and sit with it and not try to outrun it but respect it as a still small voice within me that just wants to cry at my own life’s experience of rotten unfairness. Once the anxiety reduces, I can better enjoy the passion for change and take up the activist flame with a more cheerful vigor.
Activists come in all shapes and sizes and personalities and trying to steer it all in a homogenized gloop of consensus opinion gets so fraught, because what heals me may harm another, and what heals another may harm me. Bickering breaks out and this in itself feels harmful and unsupportive and increases anxiety. This doubling and trippling of anxiety continues until the comments section resembles the coming-adrift costume of a pantomime horse, with the upper part going one way and the nether part going another way.
I think the best healing is for everyone to feel welcome to follow what feels true and right for themselves. There is a similar thing going on with some gender activists wanting to almost typex out the word “woman” as a legal definition. To those impassioned activists in such gender circles the word “woman” seems yo offend and exclude them as that is not the vision of the new paradigm they want. They want a paradigm where there are no acceptances of healings that they regard as harmful. But to many women the word “woman” is innocuous and healing for them, even though they did not invent that word but were given it regardless and even though it is a word still used to oppress and even beat them. In this world grown giddy with word wars, where suddenly any word can be the making or the breaking of you, I refuse to play. I think I just want left alone to sing my own song in my own words. When the wish for consensus power costs you your individual preferrence for your familiar language does it any longer feel like power? If it doesn’t why want it?
These thoughts I pondered today as I washed my dishes…as a natural born “woman”.
A commenter suggests that the word “psychosis” means “can I have some money”.
That may have been a joke on my humourless migrainey day so I apologise grovellingly if I missed the quip, but with the greatest respect I have to say that to me the term “psychosis” does not mean that. Although I do see how the psychotic suffer a lot of socio economic deprivations and so if any person would probably be in need of a little money it is probably those psychotic folks driven mad through abject pennilessness and a traumatic lack of food, warmth and shelter. To me the term “psychotic” describes my own personal despair of having hallucinations and delusions and paranoia and all manner of awful miseries that are not the same as depresson or anxiety or PTSD flashbacks or eating disorders or phobias or obsessive compulsive disorder. I had no psychosis until my adulthood. Prior to that I experienced all of the above and was even hospitalised and sectioned for some of them. I can only speak for myself and say that none of those bare any resemblence to the unending hell of what I have now, relentless psychosis and schizophrenia. I am all for those in the mental health activism community defining a chummy egalitarian togetherness amongst all mental illnesses as we all broadly struggle to envisage reforms at the quarry face together, but to use the body as a metaphor for a moment here…a broken pinkie finger will never be terminal cancer. And those with a broken pinkie finger who go in in life to get metaphorical terminal cancer will be glad of their own dedicated treatment options or home nurses who understand distinction between the two.
Whether one loves or loathes a “term” like psychosis is a matter of personal freedom of choice. It means severe to me. Severe distress or severe chaos or severe anguish or severe fear. But I get nowhere with the ignorant masses if I tell them I cannot stop carrying out bizarre instructions due to severe fear. They will smirk and say THE WHOLE PLANET HAS SEVERE FEAR. What this then sets off is a “what’s so special about your severe fear?”.
Having been instructed to go to a railway line at three am in the morning by my “severe fear” to save an invisible being from jumping in front of a high speed train, I can vouch for the fact that “psychosis” is so much more than severe fear…and on a train track “psychosis” is so much more than a broken pinkie finger.
And because spending a night on a train track is so freezing cold the “psychotic” are in need of better weatherproof coats, and maybe shoes, than those with a broken pinkie finger. And so I do not begrudge the psychotic all the financial help they need.
All this is not to suggest that a better term than “psychotic” could not be mooted. Language is fluid and changes all the time. And I myself in no way wish to get in the road of any progressive thrust towards a noble emancipation that even overhauls the very utterances of babbling babies at the breast, I am all for change…change is inventive and thrilling…though I am even more for “freedom of choice to change” if you feel it is right for your experience of the world.
I hope this has not made a sat upon squashed picnic hat out of what was maybe simply a thing said benevolently and whimsically. My humble apologies for sounding headachey. I do indeed have a blazing, agonizing headache and must go and lie down now….and doubtless wake up horrified at my own pomposity.
May I say that I love Hearing Voices Groups?
I have been sitting in them for many years, off and on. To me they are the beacon in the darkness. A little known fact about them is that as well as being venues where your torment is taken seriously they are occasionally places of healing laughter as shared suffering meets affectionate shared advice. They remind me of some kind of intimate, private, teepee flapping smokey tribal gathering. Your sense of illness gets understood the way “you” see it. I liken it to some cancer cottages where groups of patients with cancer get to describe their “own” experience of cancer and their “own” meanings that they derive about their “own” cancer. This sense of “Your illness is YOURS” is wonderful because you feel like a pioneer of a country, your internal landscape, that everyone is eager to hear all about. We all get to hear about each others illness symptoms as if our illnesses are metaphorical countries. And what vibrant lively countries those are! I make no apology for saying illness because in my experience my schizophrenia is a felt illness, whether anyone agrees with the notion that there is a disgnosis of schizophrenia or not. I respect those searching for better terms to fit my experience of my unique illness but a child like to use its own preferences when ill. The Hearing Voices Groups let you listen to your inner child and speak or cry or sing from that vital life source. As someone who quit antipsychotics it used to pain me that others in such groups could not join me in that part of my emancipation but I understood that they needed to cling onto whatever belief was supportive to them in their own estimation, and as they spoke of wanting to increase their meds or heed the instructions of medical professionals I wanted to pull the comfortable rug from under their complaicency and make them like carbon copies of me. But looking back I soon saw that this “rescue the pill popping idiot” attitude was from me a kind of bullying colonialism into their own unique country. A colonialism no better than the ships in bottles invading the shores of their souls from the pharmaceutical conquistadors. So I understood that treasuring someone means not making them a walking talking mirror of you, but treasuring how much they are NOT you.
I feel all of us in the Hearing Voices Groups felt, though it was never spoken, the sanctity and reverence of this kind of treasuring. It requires the grace and humility to be “aim-less” in relation to others in the group.This is rare in different sorts of therapy groups, where too rigid a structire csuses a bid for empowerment and ushers in power bids and hen pecking preachiness. Aim-lessness avoids egotistical saviouring that so often needs others to need our unwanted rescueing of their way of doing “their” country. The Hearing Voices Groups are beyond agenda. But I sense a change acoming. New brooms are wanting to institute sweeping changes that their statistics and data show could “improve” the Hearing Voices Groups. How can you perfect upon aimlessness? The peace from aimlessness is the gold standard of all healing.
When the brain cannot easily be tampered with to get it “fixed”, why not just lift it up like one of those infuriating puzzles in a glass cube and see if shaking it to bits might snare the round ball of conformity into one of many tiny cups?
On this very day, when my television tells me a vast hadron collider physics metropolis has smashed yet more vaccum cleaner dust together to find out what makes us all tick, we learn that this spacey science has discovered that an essential particle called a “muon” wobbles at unholy fast oscilations if treated to large blasts of magnetic field.
In a few weeks I am to get an MRI brain scan. I believe these involve being bodily sucked into a vortex of magnetizm for an hour. Can anyone tell me if my “muons” will be ever settle back down again like spinning ball bearings in a puzzle cube? Any Breggin readers listening here? I would like reassurance an MRI is not as risky as that Transcranial gadget or ECT.
The MRI scan I fought for is a bit of “personal research”, something no man nor breast is allowed to do. After feeling my brain alter from toxic pharmacuticals over the years I decided to conduct my own inquiry into possible brain damage. I swear the DSM has a number of descriptions reserved for people like me who are diagnosed with schizophrenia and who earnestly wish to know what has become of their brain after decades of poison. Subsequently my long awaited neuro boffin, who has the super power of “allowing” patients to check their brain in a scanner, spent alot of effort persuading all my doctors that I was instead concerned about my “breasts”. I never once mentioned my breasts to him in the clinic. That is because there is absolutely nothing wrong with them. I do not want to research my breasts. I want to see what antipsychotics have reduced my brain to. And comically I barely even want to know for myself. I’m done. I already know that without a brain scan. I want to know for all psychiatric survivors. It is a mission of mercy.
History says that medieval consultants, in their ermine fur-lined cloaks, pondered ladies wandering wombs as a cause of hysterical emotionality…or just having any feelings at all, but as far as I am aware breasts were largely left to be an additional blessed detail in Virgin and Child altar paintings or squished into bodices like apples in a barrel. But to early medicine it seems wombs were deemed the culprit for insanity through wombs being worryingly bloody and mysterious, like the beaten incarcerated
mad. I don’t know why my sad sweet breasts were a problem for the neuro magnate, with respect to offering me a brain scan. But he did copiously mention my schizophrenia so maybe my breasts cause my schizophrenia. If so, this could be the discovery of the century. Maybe science has been looking in the wrong place after all, when looking for the psychotic needle in a haystack, maybe it is not womanly wombs nor puzzling brains at all, but psychosis perhaps resides in the uncontrollable life loving exuberance of the breasts. The neuro doctor I saw confusingly seems to moonlight as a psychiatrist, which is odd, since I already have a psychiatrist and I did not ask for another psychiatrist. But maybe I should be sent to a gynecologist to check the offending breasts that may be making me hear voices. Or maybe my brain will shrink so much in due course that I will learn to function only through my breasts, like blind people adapt to sightlessness by fumbling lamposts with extra sensory ability in their fingers. Maybe my neuro doctor wanted to teach me how to use my breasts as two brains. Two for the price of one.
You may be thinking I am snooty about my neuro doctor but in reality I prefer to love all human beings, even those who are muddled up.
I am humbled by your kindness Kindred Spirit, and indeed Oldhead. My story is long and maybe would give people a clearer understanding of why I use the words I use. One day I hope to add it to the canon of marvellous literature of life experiences that other survivors have written. But at the moment I barely get any peace from my psychotic intrusions to write at all. Each comment I make is like a song a bullied kid might attempt to sing whilst being repeatedly hit. If I get a comment out all of a piece I feel uplifted all day. I don’t have alot of time to be precious about my word choices, and like I say, there are some choices that are foisted on me. My only recourse is to try to downplay those impinged choices. I realise this may tread on toes of those who maybe don’t want me to use those words. I guess its easier to think of me as like a Tourettes sufferer who offends everyone by swearing out the damning words loudly and louder and louder still. But in my estimation societal decency and societal bullying do not reside in actual words but in the spirit with which any word is sanctified or weaponized. Bullying is an underlying energy, like a gas. It fits into vessels that are neutral words that carry the energy or lob it at passers by, but yesterdays love words…..like gay….can be a neutral vessel for delightful energy….or a neutral vessel given bullying energy for tyrannizing homosexual persons…or then morphed into that same neutral vessel word for celebratory energy.
I do see how any activists want to overhall the language that was used in oppressive years. But language is neutral. It is how it is uttered that is where the bullying resides, but the utterance is just so many sound waves hitting an eardrum, the utterance is the hiss of a snake, the uttereance is not the actual snake itself. I feel too much focus is put on seizing upon neutral words that yes may now have grown stained with the blood of bullying, but the words are false trails, like once lovely but now bloody garments. You seldom find the bully IN the garments. Seeing victims waste alot of activism hours chasing the neutral words themselves is what the bullies adore.
But I only say these thoughts as “my thoughts”, which I know will be quite the wrong thoughts for others. I am glad we can have diverse thoughts here. So much of any activism that seeks to abolish a cult can itself become oppositionally linguistically cult-like in its genuine heartfelt wish to save everyone. Not that there is anything wrong with cults. I like cults. They are often keepers of huge wisdom.
Look, I dont have all the answers. I am just this ill person trying to chip in with occasional responses. I like the word “schizophrenia”. Its punk. But I also am forced to use it by a invisible bastard who hits me unendingly if I do not.
I hope you all do not hit for using it…or then being hit by everyone simultaneously, I really will grow Tourettes syndrome.
I HAVE SCHIZOPHRENIA. It causes a being in my brain who every three or four minutes orders me to regard myself as schizophrenic and mad. If I do not comply I suffer greatly. Am I to suffer more to because Mad In America commenters want me to be no longer psychotic?
Because of my psychosis I CANNOT HELP my choice of words I use to describe myself. Everyone is free to use their OWN choice of words to describe themselves or even no words. That FREEDOM is a beautiful thing.
@DrBrett, the GP presiding over the birth of myself, according to my mother, kept a bottle of whiskey in his leather gladstone medical bag, from which he would offer himself and his patients a wee nip. He was the same doctor who smoked in the treatment room….”can you pass an ashtray?”. And he prescribed for my six months colic a gallon of morphia. But he was a nice doctor and beloved by many.
But my point here is doctors can be persuaded to slid aside the whiskey glass, and cigarrettes, and noxious sleep aids for howling tots…if they get thoroughly shamed out of such practices. Shame is a powerful reason why we dont see smoking doctors in treatment rooms anymore, or indeed smoking people anywhere.
But applying shame is delicate task, too much shame and the shamed brush off all sentiment or morality and doggedly assert the noble ediface of their own sentiment and morality. Nobody likes being embarrassed. But until the prescribing of psych drugs becomes as “shameful” and “embarrassing” as offering a patient neat rum or a filter tip, the indifference of doctors will continue in a buisiness as usual mode. But it is also of note that when everyone quit cigarrettes there were “other places” to channel relentless stress, like going to the gym or meditation class. There were places a doctor could “send” nicotine craving, desperate, wits end patients to.
So as well as shaming doctors for doling out antidepressants needlessly, there needs to be a plethora of alternative places for the upset to go to and get some proper hand holding support. In climate change activism it is the same. Shame the enormous fossil fuel companies and the people squandering plastic packaging, but also build alternatives to current fuel and packaging. And make that double whammy of shame and alternative tightly together. Shame without an alternative becomes mere “bitchin”. And an alternative with no push of shame becomes pie in the sky or “negligence”. But shame is best served up by the masses. A few placcard wavers almost incentivize shameful defiance. For the masses to have knowledge of the shameful stupidity of psych drugs it needs more horror stories coming out from activist camps, like the uptick in lung cancer deaths from smoking. Death is just not sexy. Unless necrophilia is your bag. The public turn to psych pills because their doctors tell them their warts and moles and mysterious lumps are not only nothing but attention seeking, time wasting “shameful” behaviour. The loveless dismissal a patient gets on presenting a sore body finds relief in joining the gaslighting idea that maybe being an odious selfish patient is due to madness. Patient and doctor then become complicit in shoving the patient on psychiatric chemical soothers as a proxy for love and a proxy for respecting the “normal” wish for adequate “bodily centred” medical care.
Why a patient might so readily agree to the gaslighting tilt into a pill bottle is occasionally because there is a very fine sense of ego identity to be forged from cultivating an air of the tragic. I am not saying there is no underlying actual tragedy. Scratch the surface of ANY life and you will find true accounts that will make you weep. But what I am saying is that like tragic Monroe and tragic Plath and tragic Kurt Cobain, it seems a ticket to greatness and legend in a life that may, for political reasons, have zero props of “identity” in it. And there is nothing a person will take more seriously than their choice “identity” when they finally feel they have seized upon it. And if that identity is the tragic identity that needs a rattling pill bottle to confirm it and bolster it, then the pill bottle will itself be taken terribly seriously. As if it is a bottle of identity, a bottle of tragic “self”. And a “tragic” self is worth dramatically more than a lonely needy “zero self” in our bored to bits society. An air of the “tragic” is a route path to societal love, who like its meaningfulness as an art form and entertainment for them, but an air of the lonely is a route path to utter abandonment and death. Add a whiff of actual depression and we see why the whole population of the West are inching towards psych pills.
So “shaming” and “alternatives” are two things required to foster change, but I believe there needs to be an illumination about why people need to cling to an air of the “tragic” narrative as their whole “identity” and “only” form of permitted “self love”, given that it jeopardises their very brain in leading them to consume revolting psych medicines. A few decades ago your “identity” was founded and enboldened not by what tragic awfullness you felt but by your gritty deremination to survive anything at all costs. That is so crucial! But because society took advantage of such heroic stoicism and beat it into the uncomplaining shape of poverty and zero hours employment contracts and rubbish relatonships and lousy led local communuties, people have grown disdainful of being abandonned in their stoicism.
Could write all day but mustn’t…mustn’t.
Douglas Murray on you tube has stuff to say about “baby boomers”.
No, that will never do.
My comment is dishevelled. What I meant is that there were actual real books, all identical in the display case, like the Encyclopedia Britanica. A library shelf of such books. One was open and showed nothing but loads of alphabetical codes. Those codes transpired to be the genomic data of the C.Elegans nematode. I was amazed by the vast quantity of books needed to describe the genome of one miniscule and simple worm. I found that beautifully comical and poetic.
A. Science boffins meet worm.
B. Library happens.
But what I was trying to say on a deeper level is that I have always felt that the human species needs to get back to “being” nature, no only observing it through a glass slide.
We need to be “worm”.
I like your robust article Martin. It is detailed and clear. And I like the great points made by @Kindredspirit also.
Sometimes I feel it would be good to not only have in depth articles that year after year splendidly illuminate the debacle but…
I think of creative campaigns like extinction rebellion. Whether you think they flopped or flaunted, they at least made the years and years of unheard reams of data spewing forth about climate change feel less like a paralysing roll calls of the dead icebergs and more like actual activism. Great articles on climate change change nothing. Not until people fling a cup of frustration at the television and go and bodily lie down in a car factory. It is important to read up to date articles but what they outline is…
A. there is a huge problem.
B. faceless industries should be persuaded to change.
C. nobody knows how you the reader can do that.
D. so sit with your impotent knowledge and despair.
At least Martin’s fine article outlines some key steps.
On a separate note…I can say for myself that sometimes the most interesting and passionate and alive times of my life have been when I have felt suicidal. I think people can confuse suicidality with a sort of empty deadness and numbness that comes from feeling nothing at all. Whilst dead that way I yearned to cease the quality of deadness in a gesture that would “wake me up into life again”. So that sort of bleak act has a striving to live. And in my life, “living” has quite often had someone shouting at me, or a flooding washing machine, or a dangerous protest lighting up my street, or a lover telling me he never wants to see me again….all fantastic, epic stuff!
So I believe some of the uptick in suicide rates is actually due to wanting a more visceral and dangerous and vivid existence. And loneliness makes that less likely. So cushioning the routinely suicidal on a cocktail of sedative drugs and teaching them to fear feeling any feeling at all is probably unhelpful in the long run. Though I do also chime with @Kindred that our world needs to be way more loving generally. The acutely suicidal need more care not less.
Could go on but Ive got to listen to moody Max Richter music now. Taraaa
I want to apologize to the authors for sounding a tad catty. I imagine tossing a beloved article into the comments section is like being hurled into a bear pit. And you article writers are only trying to help. You have the best intentions. And in reimagining an alternative care to psychiatry we need to encourage innovators to come forward with their ideas. We live in an age of instant shouting and cancelling and this may begin to background any inspired visions for a better care. Mostly theories are games that are neutral. A person can elegantly dissect theories with not a spark of emotional sour grapes, because theories are not personal. But because the survivor activist camp are so devastated by some theories ending up “In The Wrong Hands”….and let’s face it half the professionals who might implement such neutral theories may have the wrong hands, simply because they have not had enough life experiences to make them humble, and what happens is a survivor reads the neutral theory, sees it being warped out of shape and meted out by a mini dictator, and all the alarm bells in the comments section start shrieking “Hands Off Our Brains!!!”
But really the theory itself is neutral and not dangerous but benign and only meant to be an alternative amidst many. People confuse the theory with the zombie of psychiatry getting back up off the floor after being lamped by an ashtray. But it means we do this platform a disservice if we cannot let good people with their neutral theories pipe up.
That is not to say don’t growl at the bleeding obvious.
I just want to mention a couple of other things that were stimulated by the article. I said choice is important because we so quickly forget that who we are now is not permanent. Fad treatments come and go. In my teens I used to love a book on rosharsh inkblot tests. In my twenties it was about Freud. Then Jung. Then Gestalt therapy. On and on. People need these tarzan ropes to leap to before they fall. The next new exciting one gives a placebo lift. So a broad selection of many care options is all to the good, not just to cater to a population of fusspots each choosing their darling therapy style but to cater to one wandering fussy life.
The brain you have on today that only likes herbal treatments may be a brain tomorrow that really wants a person centred approach.
Having said this much I do enjoy joining in the rowdy sport that goes on in the comments section and I feel the exacting standards are necessary.
Lastly I want to offer a word. “Enmeshment”. People think psychosis is to the mind like a demon or big bit of furniture in a corner of a room. There it is see? And they think it got there by trauma. As if trauma were a vehicle like a lorry that crashed into the person and left such wreckage that the person, attempting to avoid thinking of the trauma, unwittingly shoved a big bit of furniture called psychosis into a room’s alcove, to stare at it all day. My experience of my psychosis is more like my mind is like conjoined twins with a mutual veinous network. The intricacy of the dominant twin’s capilaries are so “enmeshed” with mine that it is really finicky to try to snip apart those blood vessels to free my own. The blood vessel analogy I am using refers to thoughts. It is difficult to snip aside the psychotic thoughts and leave my own thoughts independent because they are meshed so much that the beginning of one thought may belong to the conjoined twin but the centre of the thought may belong to me, and the end may belong to the conjoined twin again. Any brutal surgical or chemical attempt to divide that mesh invariably kills both twins. And the sometimes innocent idea of focusing on removing the big lump of furniture in the corner of the room, by revisiting the car crash of trauma, tends not to appreciate the finicky state of “enmeshment” of thoughts. A therapist may say “Try not to think that way or this way”. But it is like telling a conjoined twin to try to not to let blood flow left or right. Now I am not saying my experience is anyone elses. And I am not saying that therapy is not a wonderful way to care and support the psychotic. It definitely is. But to me the Voice Hearing Support Groups offer the best in terms of respecting “enmeshment” or “conjoinedness of thinking”. Nobody wants to be “conjoined”. Nobody wants intrusive thoughts. I have not met one person who has a love of psychosis. It may have uplifting perks but mostly psychosis is so tormenting that I struggle to see how anyone can think a person chooses it even subconsciously as a sticking plaster or a better bet than being just plain sobbingly traumatized. Give me sobbing any day! Sobbing is serenely lovely. Torture is not. And all psychosises are abject miserable torture.
Where I do agree with the article is in its wonderment at the ingenuity in the psyche of the suffering, ingenuity to make creative adjustments within them that involve very nice fantasies. Splendid organic survival mechsnisms do occur, and it is a relief to talk about these. Like a conjoined twin getting lonely relief by whispering to a therapist that she keeps a hidden diary all secret from the dominant twin. Having more therapists for the psychotic to unburden to is all to the good. Certainly so.
But I also must say that many with psychosis can probably mend themselves by coming off chronic doses of pills that sedate their “mesh” to a standstill. And as for criminality, akathesia is probably where to look, more than trauma, I would guess. Akasthesia is a bit like dosing someone on ketamine and crystal meth and speed and downers and drink and asking them to give back the dropped pocketbook to the nice little old lady.
For this next comment you will need to listen to “She”, song by Alice Phoebe Lou.
Just slow dancing and wish to add a further point. Although being God-like is exhausting and far worse than any trauma such a delusion might have miraculously sprung from, I will say that, for myself, feeling somewhat grandiose is a joyous, unmissable pleasure. I want everyone on the planet to enjoy feeling grandiose. Though I am tea total the alcohol business is founded on the aim of increasing people’s grandiosity to melodramatic effect. Children are excellent at being grandiose. A child will daub a wall with paints and feel supremely pleased with his or her accomplishment. No criticism can permeate the certainty of magnificence of that flawless artist. We come from such grandiosity. It is kicked out of us by “the reasoners” at school, who get us to “compare” our dribbly naive masterpieces with the state sanctioned ones. Our grandiosity is chipped away at by criticism, like chisels to marble, intent on moulding us, hurrying out another lookalike, Greek statue, chill in its artificial perfection.
There grows a longing to return to celebrating a simple childhood grandiosity, of the “unearned” variety, a juvenile grandiosity that says “I am special just because I know I am”. When you rediscover it as a mad woman you don’t ever want to let that healing feeling go. Look at nature. Is not the bird of paradise grandiose? The noble lioness? The mighty moose? The glitzy koi carp fish? They luxuriate in their grandiosity. It is not like the pomp of egotism, it is raw splendour that seeks nothing from anyone, it already has the lot, in the core knowingness of specialness. A natural birthright!
Sit the sumptuous bird of paradise, its feathers exploding upside down like a champaign magnum, in a rational office or a CBT office, to pursue a cure from logic and I can see that lovely supportive grandiose feeling withering. I can see the splotty colourful painting disintegrating. And I can see someone orderly, rational, neat and tidy emerging. Perhaps they will feel saved because rationalising has curbed whatever causes their distress, maybe a tendency to think they have to stay awake all night in God-like desperation to save the globe, but will rationalising have knocked the lovely feeling of exuberant grandiosity all out of whack? That grandiosity is a food, childish lumpy breadcrumbs to sustain the desperate God-like sufferer. In other words many therapies in attempting to tweak out psychotic thorns pull to pieces beautiful natural aspects that are so healing the rest of sane society does not even remember enjoying feeling that way themselves. They assume everything going on in the mad mind is to be replaced with reason, it is a reason that alone can sustain nobody for very long. Not without a good stiff drink…
Some moves the mad do are incredibly wise even though the rest of them may be miserable and desperate for torment to end. It is too easy to say everything inside the madness is counterproductive and should be chipped off…chip…chip…chip….
Choice is what matters. I have known people who are devotees of psychiatry and feel better with it. I have known people who feel hatred of psychiatry but adoration of psychology. I have known people who get better on kindness and soup. I have known people travel back and forth revisiting all of these choices, depending on whatever distress is happening to them. It is easy to shout it must be this way and not that way. My way or the high way. But I think there should be no dominant religion of treatment at all but all sorts of options and choices. Anything “rational” has bullying connotations in it in my experience. It seems an unfortunate and off putting term. “Stop being mad…try to be like us sane people…be rational!”
But I know loads of people get a rush from following logic. They see in its hopeful orderliness the prospect that feelings could become orderly, neat and tidy. Feelings are n e v e r neat. Never will be.
It does seem that the therapy outlined in this article might go to war on feelings in order to tidy things up so that there are only the “right” feelings, or feelings agreed upon by societal consensus. Finding the elusive “cause” to messy feelings seems to want to block feelings with rational thought or rational eureka moments. I can understand this for intolerable distressing conditions but it has been my observation that distress is often caused by not feeling nearly enough! Logic bars feelings. “Feeling” feelings discharges distress. But I hope there will be lots of many different funds and provisions and clinics and houses and styles of treatment for helping people overcome distress. I hope these will be on offer for all of us “different” people with our “different” choices.
I would like to add one point however. Having a delusion of being God-like is an awful job. Being God-like is nothing like sane people think it is. They think it must be grand to expand on the silken cushions of egotism and solve the problem of personal failure by winking in a golden hand held mirror all day. That presumption is so inaccurate and silly! Being stuck in a God-like delusion is a unique form of existential torture few could survive. Being God-like is a full on herculean chore, full of guilt about not being able to reach everyone overnight and save everybody. I think the authors are making the same mistake popular culture does in swapping psychotic grandiosity with psychopathic imperviousness to other people’s suffering. It would be fantastic if I were impervious to other people’s pain. But I am schizophrenic and feel I have to do
“e v e r y t h i n g”
I can to save the world and let me say it is no heaven to feel that way at all. So trying to imply that drifting in that direction is a quick fix to my low self esteem is an insult to my intelligence and detracts from the abyssmal, terrible anguish that comes from being as a God.
I would say that most delusions are not tricksy ways to avoid processing old traumas, like school kids avoid doing homestudy, but delusions are more akin to fevers from the rumbling on of traumas, and sometimes mysteriously no traumas at all. As fevers, like covid fevers, the main focus should be on caring for the befevered to help them get well again. The haste to find “causes” implies a search for “cures” but so often in the past the “cures” have been crueller than just accepting the fever is what it is and being kind and swaddling the distressed in cosy blankets.
That is not to say any relative should be left to bear the burden of feeding, washing, clothing, the feverish. And it is not to say we should not search for “cures” but the latest research about covid fevers suggests that those who allow their feverish high temperature without taking pain relief to reduce the fever Get Better Faster. The fever IS an immune system working robustly and healthily. The fever IS the medicine. The madness is the cure. That is perhaps why psychosis improves quicker in rural communities where there are no cures.
But dismiss me do, for what do I know? I can only speak for myself and hope nobody is listening. And I hope this does not come over as a grumpy shin kicking to a fine article, an article itself so wonderfully brimming with an understandable God-like impulse to offer a rational treatment that will save the world of those with God-like big problems. I like all pioneering therapies, no matter how rational and logical, because the world is not all about me, me, me. Other people are “different” from me. Other people shall want the “choice” to do rational therapies, and may speedily thrive on them…like people get better on biscuits.
@Oldhead, thank you for your thoughts on my self description as a mad person. I very much like your gentle persuasion in a world where nobody can say what they are without it getting in trouble for it.
I did the meyers brigs personality test in my teens. I did it in my twenties. I did it recently. Every time it gives the same result. I am an INFJ. Only two percent of the world’s population think like me. I am outgunned. I have had a life of being met with bewildered stares after I have spoken. It has given me the option of either agreeing that I am embarrassingly bewildering or that I am, as the meyers brigs test says “rare”. I prefer “rare” as it suits my penchant for vainglory, but another word I use for myself is “mad”. To me it is “Mad poet” “Mad as a hatter” “Madly in love with life” “Mad not to” “Mad as a March hare” “Mr Rochester’s Mad woman in the attic” “Macbeth’s three mad witches” on and on. I like calling myself mad because it sort of says to the world “I am not you”. Of course I could just say that but it gets exhausting because the repeated follow on question from others is “Why are you not me?” “Why don’t you agree with my opinions?” “Why do you not see the logic of my argumentation, politics, religion?”. I feel my life is too short to pander to peoples need to understand the minutiae of why I am as I am. Declaring myself Mad is a shutting down of other people’s bullying, a way of saying “Leave me alone to think and be and say and do as I freely choose and realise I do not have to pay lip service to whatever verbal trends are in vogue”. But also I see my own self definition of Madness as declaring that I am commited to not feeling a burden to always “make sense”. My madness is therefore a way of “being” that I like to celebrate for myself. I am not saying everyone else has to concur. I am aware other people loathe that word and have felt themselves excluded from society by it. I always relish being excluded from society because society is a prison.
I am aware that people have felt hurt by psychiatry rubber stamping them as “Mad” but to me that word is arbitrary. It could be the word “Lemons” or “Pineapples” or “Gay” or “Jew”. Any regime can use any word to point an accusatorial finger and signal “difference” but ultimately it is only the “difference” that is being oppressed, and I feel proud to be different. I do not want to be the same as everyone else. I do understand that many survivors feel they have been tortured on the strength of such a mere word, a mere three letters, like “Jew” is three letters. In life people are so frightened of the “different” they are always going to dream up one word or another to disdain the “different”. The problem is not the word but the fear behind the use of such words, that drives outward bullying to seek to control the “different”.
But there is a very complicated other reason for my using terms to describe myself that you might dearly wish I would not. It is this… one aspect of my schizophrenia is a dominating dictator being who likes to demand that all day every day I say I am schizophrenic. If I do not he tortures me. So between his ordering me to say the word schizophrenia and antipsychiatry telling me not to I fall into a chasm of extra suffering. I cannot please everyone. And in any case after all these years my using the word schizophrenia to describe myself is now water off a ducks back. Indeed I have grown to like the word for myself, like having been forced into a marriage where I have to accept the surname. After all these years I am okay with it. Whilst here I may as well also say that not all bodies are made in a factory. Everybody’s body and brain are unique to them. I know for myself that my schizophrenia feels like an illness at times to me. People can say it is or it isn’t, according to brain scans and test tubes and science, but until someone opens up my brain, MY BRAIN, that is unique to me and did not come out of a factory where all brains are identical it is possible my schizophrenia is a real illness that MY BRAIN, not anyone else’s brain, has given me. And after years of antipsychotics I can well believe that those chemicals alone may have given me an added boost of schizophrenia, of a brain damage sort.
I did play with calling my schizophrenia something else and I did play with always couching that term in quotation marks but it began to feel to me like I was being bullied into “talking nicely”, which is what the institution of psychiatry are ever keen to impose.
I understand that in activism there can be a tight control of a replacing ideology and this often grows a new emancipating language and if you refuse to echo it you are not “one of us”. But then to me that smacks of “othering” and flagging up “difference” and fearing “difference”. In a campaign to shout loudly that we are not all like factory produced eggs in an egg box I feel there should be a looser kind of tolerance. But that is just my opinion today. Being “Mad” I might change it all tomorrow and wave the banner against using the word schizophrenia for myself or describing myself as mad. But really it is my choice.
I am often swayed in my choice by hearing other peoples gentle wisdom. But I cannot listen all day, every day, to eight billion people’s bits and pieces of wisdom or I would become even iller. Sometimes I prefer to stay refreshingly stupid.
And as a blank staring stupid person I am away now to paint my hall floor a suitably blank shade of paint, whilst my gruelling manifesting symptoms of psychosis lurch around after me, demanding that I keep telling myself I am schizophrenic and if I refuse I will get persecuted to point of suicide.
I’ve had a little nap and am just wanting to say to Chia Po Cheng that I omitted to say I like your article.
A cinema offered to change some of its seats to welcome different tall people. They gave the seats more leg room, of course it meant other seats had to have crampy leg room. Then people who were paraplegic arrived at the cinema in beds, so people had to take some seats away to make room. Then very sporting people came and said they did not want cinema seats at all but an easily accessible track between seats where they could jog through any movie boring bits. They wanted the right to keep physically fit even mid trailer. Then people of the light came and said they felt excluded by having to sit in dark auditorium. So one half of the cinema was so brightly lit you could see people kissing in the back row, and these people asked for a privacy screen installed by an architect and for it to be drawn, but lonely people sitting in row twelve felt humiliated by the plush velvet privacy screen since it kind of made the snoggers seem more worthy of special regard. Then a hippie arrived and said he did not agree with seats on spiritiual grounds because they are bad for bodily chakras and really the cinema ought to welcome those who want to watch a car chase from a bean bag. Then a besuited executive breezed in and wanted all the seats restored to how they used to be back in the nineteen thirties. Then a breast feeding mom with ten children asked that some seats be adaptable as diaper changing tables.
The cinema owner sat up all night by candle light trying to include everyone who ever felt they had a difference that needed cherishing by provision of specially made cinema seats. He was desperate to make everyone feel welcome but the physical properties of the communal space of the building made it difficult to meet everyone’s needs without demolishing the cinema. That would be sad because alot of people had enjoyed the cinema over the years. Nobody complained about seats before because seats were not regarded as harmful, just uncomfortable for an hour. But now people were of the belief that being uncomfortable for an hour could lead to suicide. The tall person could grow nihilistic from being forced to feel uncomfortable because of the wrong type of seat. The kisses could wind up in a double suicide without the comfort of their curtain. The mom feeling uncomfortable could start hitting her kids during adverts and the kids could grow up suicidal. The hippie, after even five minutes on a rigid square chair, could succumb to a depth of melancholy that could finish him. Everyone now equated inclusion with life and exclusion with death because of the rise of the serious importance of suicide. Suicide that everyone feels on an hourly basis, from millionaires to minors. Suicide that used to be so elusive it was only the discreet parlour game of toffs who were arrested for even thinking such thoughts. But now anything that reeks of discomfort could be deemed exclusion and therefore a potential source of decline into suicide, and everyone knows…cinema seats are insuffereable for anybodies body after popcorn and fizzy cola, you get clicky knees, and so cinema seats are unjust and unfair and need sweeping changes to stop everyone leaping off bridges clutching their tragic blockbuster ticket. Everyone fears they may suddenly go suicidal at a shopping mall if they sat in discomfort for an hour at cinema that did not love them enough. It is a mass hysteria about death, in this era that comes in the guise of frighteningly easy suicide. And it combines with a mass hysteria about a perceived societal lack of love. Everyone has been sold the notion they can only survive death by suicide with the bankable, kitch, phoney love pedalled by capitalism. That love has fairy dust and Valentines cards and unconditional families and unrealistic smaltz that only a paragon of perfection could utter. Everyone is chasing that paragon of perfection and expecting that of even a humble cinema owner, and if that unrealistic love proves disappointing and the uncomfortable is not made comfortable immediately then the cinema owner is guilty of causing everyone to suicide. It reminds me of the mass hysteria during the Spanish Inquisition where humble herbalists in there millions were set up on flickering stakes for not making people comfortable in their fear of death.
We all want to feel included and loved and none of us want to feel suicidal or cause others to feel that way. All are equal in differences, so all are equal. But our many trillions of differences cannot bring about a perfect cinema, or perfect world, for us, without inconveniencing the perfect cinema or perfect world of someone else. That is if the perfect world is the human built civilization variety of world. The actual real world is the natural world and is enormous and accomodates many different kinds of creatures very easily and without qualms. A tall giraffe gets a comfortable tree. A hippie crocodile gets a comfortable woodstock mud pool. A maternal breast feeding minky whale gets a whole ocean.
Birth certificates seem to be this month’s uncomfortable chair. As someone who did the trans things for a while I cannot see why having others find out you used to be another sex could not be a source of ecststic celebration, like revealling you used to be poor or unmusical or unartistic but now you are the glorious fruition of that beginning not a shamed appologist for that beginning. The shame needs ousted not the origins. As a schizophrenic I could inadvertantly buy into societal shame about my schizophrenic origins and cover my schizophrenia with proper convincing “sanity” and request that my certificates be changed to conceal it. But I prefer to dance with society’s need to shame…to fix society.
Many lovely comments in here from dazzling minds. I just want to chip in with request that notion of “tapering” is never allowed to be a stand alone concept. It should always be in close proximity to a word akin to “pain relief”. To use the analogy of a plaster cast on a broken leg, which is only one aspect of treatment, there has to be a response from those responsible for putting a person in jeopardy of serious withdrawal anguish to also address that intolerable “pain”, a mental torture that can go on for months or longer.
I can see a culture of indifference setting in, tandem to the simplistic advice to run along and “taper”. Have you tapered yet? Did you follow your tapering schedule to the letter? That withdrawal symptom shouldn’t happen by week eight of tapering so you must be imagining it! You must have skipped a dose or crumb in your tapering. Did you not read the booklet? Did you not listen to the nurse? You must have done something wrong! You must be using tapering as an attention seeking thing. Everyone knows how to taper and so stop talking all day about how difficult your tapering is. Keep taking the tapering, nice and slow, so slow you’ll be dead before you can sue for irreversible brain damage. What’s that? Oh you have done a long taper and your old self still hasn’t come back? Well that must be disease causing melty brains. Still a long or short or longshort or longmediumshort taper is advisable according to government guidelines so “Keep taking the tablets….oops keep doing the tapering” Either way nobody will have to fund treatment of your broken soul.
I am all for tapering as slow as possible, but I believe the focus on that alone is insufficient. It is like shutting up a new mother who has post natal psychosis with a chemical cosh without dealing with her hellish feelings.
Dont let the medical establishment get away with turning “Keep taking the pills” to “Keep endlessly tapering”. A life needs more than a slapped on plaster cast.
Sorry to sound shouty. Its not at any comments. Its at the wiley drugs makers and pushers. Everyone agrees that for many reducing and quitting brain meds is probably healthier, and everyone agrees slow tapering will help soften withdrawals but as to repairing underlying brain damage from years of toxins that is not so clear, even though people do better off antipsychotics. Quite frankly I am of the opinion, rightly or wrongly, thst a person with half their head blown off would fare remarkably better off antipsychotics, it would not change the fact they still have a lot of missing brain.
A person whose missing brain was caused by being on antipsychotics for years probably would fare better off antipsychotics, and in their faring better it might be assumed that their excruciatingly slow tapering that led up to their triumphantly faring better implies their brain is all better now. A brain in situ. What if the “only” reason they fare well now is “just” because they have bodily swerved another miserable year of intolerable antipsychotic side effects, and once those lift and withdrawals come to a resting pause everyone has the impression that the improvement means there is no long term damage?
It is like holding a hostage in a cell and beating them to the point of bone breakage and actual irreversible damage, then spiking their food with horrible sedatives for years, then slowly tapering them off those yucky sedatives, to the extent they wake up and rise with Lazarus like agility and everyone claps and says “Well this improvement just goes to show there is NO irreversible bodily damage”.
To be honest I am weary of the global neurosis about genitals. The world is heating up from runaway climate change. The gulf stream is going to usher an Ice Age to Europe. Famine and dearth are going to be the birth certificates of a trillion newborns and all the thinkers want to do is ponder the imponderables of genitals, as if genitals are a kind of wound that needs mending, like people used to do with hearts, when they’d say their heart was broken. I appreciate that it is great to treat everyone equally and make no distinction between any person. That is my goal. All are one. However, I see the erasure of the distinction between things like male and female as being a bit like the erasure of the distinction between rich and poor or child and adult. If there is no record of whether someone is female or a child or poor how can their rights to special considerations be protected? If a child is no longer deemed a child but a mini adult they might be coerced to have sex by adults who tout that everyone should be welcome to go to kindergartens. We have distinctions for good reasons. Although regretably these distinctions can be be abused by cruel stigmatizers who oppress those so protected or distinguished or oppress those who are not part of that group. Specialness flips over to stigma and back again at the stroke of a bureaucratic pen.
As a mad person I know all about stigma but I dont ask my friends to change and be similarly as mad as myself so as to help me feel less excluded. Madness is not a wound that I think the whole globe should kiss all better. Madness IS the mending of the wound. The beauty of the authentically real mad people I know is that they invariably want nothing from anybody. For that they stand free. And for being free they are punished by society who cannot control such original people who cannot be bought.
I am not taking any one position here. As a mad person I have been everyone. I have been gay, straight, trans, gender fluid, non binary. I was writing about the glory of these specific ways of being over a decade ago, long before the word ‘woke’ was conjured up. I believe all are equal, in our wonderful differences. Difference is to be loved and celebrated and deemed special.
As for the birth certificates piece in the article, why stop at ‘male’ and ‘female’ being obscured? Why not resist even saying its a human baby since maybe it will want to remain only designated the definition of zygote, or perhaps years later identify just as a mammal? Does a whole continent’s legislation have to change just because I am schizophrenic and believe I am not just me but a ‘group’ of divine beings? Was my midwife negligent for not documenting my birth as multiple? Hims and hers? The law can only cushion so many of our identity fantasies before the establishment of someone’s basic legal rights bumps up against the solemnity of someone elses basic legal rights. The law is an ass that can only do the basics. But the basics can be more workable than the attempt at utopia. The path to utopia is always littered with war crimes.
I feel people can choose to be as they want to be good enough these days in the West. Other countries are a whole other debate. But what gender we all want to be will soon take second stage when climate change gatecrashes our decadent party.
Whilst I am in favour of slow tapering I imagine that it could become a get out clause to legal claims of antipsychotics being the cause of long term or permanent damage. A lawyer working for Big Pharma can argue that a complainant’s long term misery is not due to brain reconfiguration but just idiotically not tapering
s l o w l y e n o u g h.
It is hard to taper slowly when the side effects of antipsychotics are so odious and potentially life threatening that you darent linger another hour on them longer than you have to. Plus doing anything slowly whilst experiencing the maelstrom of agitation from rampant adrenalin and cortisol that surges hourly for months on end when you are withdrawing from antipsychotics makes remaining on the drug even at micro doses feel fraught with danger. I am not convinced that a slow taper is a magic wand against the slew of withdrawal symptoms though I definitely think coming off gradually ultimately helps the brain recover better AFTER withdrawals have been braved. Are soft withdrawals from a slow taper easier to endure than hard withdrawals from a rapid taper? Is a shard of glass embedded in your foot less painful and debilitating than a broken leg? Pain is pain is pain. Withdrawals are withdrawals. All of it is awful. I dread the more sycophantically serene of medical professionals and lawyers coming up with a notion that your suffering in your withdrawals is ALL YOUR FAULT.
And the idea that the control of your runaway suffering is ALL IN YOUR HANDS (if only you’d read the new damn tapering instruction pamphlet in the drug box…assuming your withdrawal symptoms will let you actually sit long enough to absorb what is written on it) abdacates care providers from THEIR responsibility to spend tons of appropriate funds building detox convalesence homes to right the mistakes of such industrial errors. Tapering, as with deep sea divers resurfacing from the bottom of the ocean, must be done gradually so as not to explode the lungs in the bends. But I believe that for some people, antipsychotic side effects are so utterly soul destroying that staying on them just to wince out a softer withdrawal could be how medical professionals KEEP such people on the drugs FOR YEARS.
I came off high quantities of antipsychotics overnight after years of being on them. And whilst I would NEVER want anyone to follow my example, I can only state my truth of my own experience here that says….look….look…look….I am still here. And I have never felt better.
What the human species needs is the tincture of time.
Sensuous whole brain immersion in life experience needs idle time to absorb every feeling properly, like an unhurried meal yeilds more nutrients. Skipping feelings is like skipping essential vitamins.
No employer pays employees to gaze into space and yet doing so is the most important part of any job. The brain rests and heals in such moments of dumb incomprehension. The brain needs such time to recuperate. A part of any employment contract should involve employees becoming better profficient at letting their gaze meander unseeingly, as the unhurried heiffer chews her cud. The stress of being watched from dawn to dusk by a million rushing humans is chronically sub clinically menacing. A human is compelled to perform reasonableness of intention while being observed by even a casual passer by. Gazing is deemed so unreasonable it is equated with things like greed about time, laziness about time, ineptitude in squandering time, sneakiness, empty headed worthlessness. But a human keeling over with stress invariably has a head full of only more of the same stress to be pedalled to some else. I do like an empty head. The emptier the better. I do not doubt that the ancestral worm’s head was fabulously empty of all but a few fizzes of dopamine. I once visited a municipal building of grey stone and indigo shadows, wherein I chanced to find my nose pressed up against a dusty display cabinet. Inside it sat a shelf of identital looking books, one of which was propped open for inspection. The pages were nothing but hundreds of alphabetical letters. Puzzled, I searched for some ticket that might betray the books as an irritating art installation. To my delighted startle I suddenly noticed the titles of the books. Each chubby volume was a fraction of the genome of a nematode worm that ultimately inspired the evolution of humans. I laughed uproariously, the laugh of a human cave woman who had once been a worm, at how a nursery rhyme, simplistic worm had been lavished with global scrutiny and excrutiating scientific enquiry. All of which gave birth to pages and pages of elegant ABC’s.
Long, long ago this lassooing worm, elongated like a telescopic microscope. And it was through a microscope that its own creation, of human forms, peered back down, and saw the worm, that quiver of life from which humanity sprung, and they were so overawed they went positively preverbal, reduced to describing it in nothing more complex than letters.
What the human species needs is to be more worm.
Enjoy the naked bliss of empty headedness.
But the institute of psychiatry has a pill for that. The worm’s lofty daughters and sons working in the mental health establishment would rather not remember their humble origins.
@Jancarol, yes. Yes, you see what I see.
When a person is in a plane that is going to make a crash landing they tend not to whip out their kindle to nervously hurry to read the end of an interesting textbook, a tome that has been expanding their thinking.
They call mom.
Even dictators would call mom. Our home is our “Feelings”. Its roof, that protects us from external elements, is our “Thinking”. Both are needed. But a roof, or mind, that is to heavy or oppressive or overbearing demolishes the “Feelings” inside.
@Willoweed. Yes. Yes I agree with some of what you say too. Thinking is strongly bound up with ego identity, and even although thinking aspires to reach logical objectivity and impartiality, which we might imagine would lead away from the heat of ego identity, such objectivity can sometimes be the beknighting of egotism, in regarding one’s mind as “better than anyone elses mind at doing being above the messiness of feeling”. And this “better than” outlook can sometimes, though not always, give rise to bullying, of those deemed “less than”…for “feeling” too much.
I am not against academia or intellectual expertise. I glory in such. But like you and @Jancarol and like a million indigenous peoples who cherish a more “feeling” connection to the environment, when it comes to internet style bickering I simply cannot be bothered.
You smell a rose through the nose not through a dictionary.
Here’s a rose for everyone!
Nae…Never did like “Great Thinkers”.
I vastly prefer “Great Feelers”. Of whom infants, who “know” nothing but the giving of unconditional love, tend to be the most supremely accomplished. If the planet were run by a baby who knows nothing but simply how to cry or laugh the world would be an absolute heaven on Earth.
People who have traditionally been locked up for seeming apparently mad were often not locked up for being “Great Thinkers” but were more incarcerated for being “Great Feelers”. Those who “feel alot” are deemed “disturbed” because “feeling” has always been more honest, direct and revolutionary than “thinking”. Put a so called “mad person” in a room and they are more powerful than any “Great Thinkers” therein. Put a baby in a room and all the “Great Thinkers” cannot think straight. Which is no bad thing. Straight thinking sometimes finds its concluding cold perfection in the construction of a better type of nuclear warhead. Something no delightfully feeling baby, or wonderfully impassioned “mad person” would ever waste precious time over.
Thinking is a good game, like threading beads on a string. It is entertaining to the mind made bored to distraction by modern life, but when we go to bed at night our dreams are not math classes or physics lessons, our dreams are babyish and incredibly “feeling”, because at heart that is humanity at its “Greatest”.
Creativity can only come about in the first instance through feeling alot. Civilization is inspired and grows from the seed of such feeling. Civilization implodes on a chaos of too many restrictive rules, rules which are the byproducts of thinking.
At its “Greatest” humanity is the archetypal baby….or so called “mad person”.
There is a special depth of mockery reserved for any “Great Feeler”. What can I say…humanity likes to mock what it cannot control…these being the uncontrollable honest truth speaking babies and the uncontrollable honest truth speaking “mad”.
People are taught to regard babies as stupid. Ditto the mad. But a weapon of mass destruction is the stupidest thing ever to have come out of a “Great Thinker”. What baby ever built a nuclear silo? Or enough warheads to obliterate all the scholarly libraries polished by the said “Great Thinkers”? With potentially Mr Peterson’s “Great Thinker” thoughtful book among the smoke and ashes.
People take benzos because they are encouraged to regard being a big baby as a big problem. Actually just allowing yourself curl up foetal and to be a big baby, without recourse to numbing benzos, seems to me to be the most beautiful profound “answer” to every thinkerly headachey question. I would love to see Mr Peterson drop the meat diet and ketamine and pharmaceuticals and thinking all day and instead embrace being a big baby. Sometimes I imagine he almost, almost achieves that pinnacle of divine wisdom, when his voice croaks as if choked up with…what…what is it…”Great Feelings”. But quick as a magician’s trick composure grips him in pensive intellectualism….and all is lost.
And I would say that I have the same concern for Mr Peterson on or off his drugs as I do also for the many psychiatrists, psychologists, nurses on or off their drugs. Ill people are needing healing, whoever they happen to be.
I should clarify my previous comment. “Force” is an elastic word that can encompass soft forcings like coercion and “well intentioned” bullying. And all of these can sound merely like the gentle art of persuasion. I should not have used the word force so sloppily. I must apologise for doing so.
I believe that Mr Peterson wrote, in one of his many chapters, about a child dinner guest who was something of an ardent food refuser. Mr Peterson apparently took great exception to this and proceeded to “persuade” the child to eat. The child was extreemly reluctant. I found the episode far from a triumph of wills. I found it all sad.
It is my belief that our bodies are our own and that control over food choices should mostly be our own.
I have no “mild” hostility to someone who forced an upset child to eat to prove an indigestible philosophical nugget. If you cannot hear the distress of a child it is probably because you cannot hear your own distress, and if you cannot hear your own distress you will call it by another name…like tardiness, or incompetence, or stupidity. Judgemental cruel taunts that you may have been conditioned to be enamoured of by a care giver in your own childhood, and it is these taunts you may seek to sort by recourse to sedatives that just dont ever deal with the root cause of your distress. And when you see tardiness and incompetence and stupidity in others, particularly someone smaller than you, you might just fear in them what you cannot love about yourself.
I listen to the music of what people say. I pay less attention to the verbal vanity we are all expected to use to demark intelligence. The music is much more interesting. Is the sound of a voice whining, or irrate, or bombastic? I am no fan of Mr Peterson’s voice..
I like people to sound uncertain.
Wearing my new emerald green migraine shades so forgive the typos and wincing rush to return to gothic darkness…but it sounds like you were thrown under a bus. The staff should have nurtured your passion to make a difference, not pulverized it. Consider the tradition of apprentices. An apprentice was helped to flourish and grow in confidence and this was made possible by the building up of a relationship to the wiser overseer. But what often happens nowadays is a stressed out team of many personalities all bickering and competing means you dizzily cannot form a relationship. The staff are blind to why you might need one since they dont feel they need one, but that is because THEY ALL KNOW EACHOTHER.
Oldhead, thankyou for cheery ripostes. I am currently unable to wax lyrical due to a migraine caused by light and screen glare, which will pass. And to the author of this piece thankyou for raising a subject of huge importance. It took years for polite society to accept the need for bowel cancer screening. Guts have apparently never been as sexy as glamourous brains and yet the gut is every foetuses first brain. The gut makes most of our serotonin amongst other mood juices.
Just waiting for a pharmacist to croon that a new “tapering elixir” is available. One that takes a long long long long long long long long long long long long time to help you plump the cushionyness of your brain back to normal. A tapering capsule that sets your brain to looking like you never did take a pill in your life. A sublingual lozenge at bedtime with a milky drink, to leave it looking “just so….”
But what would it be called? A new tapering adjunct that is a life long medicine for our life long medicine? Any ideas?
How about “Snailoslowzac”
or “Notnowfreezepam” or “Tapierseattapers” or “Onlynevercomeoffit”?
The Blue Whale in the room is that there are NO free “people support clinics” to offer free “people care” to help people withdraw. The poor brain damaged are expected to think it is the FAULT of their long or short tapering that ails them so and they must shut up and go and crawl under a rock and shoogle the glitter of broken pills onto weighing scales borrowed from heroin addicts.
A cigarrette factory says “Oh sorry you got hooked but worry no more, studies say if you snip your cigarrettes into fluffy clippings of tobaco over the course of two years you might acquire a taste for water and apples and healthy things….eventually.
Fear not, dear Steve. We can still have our cake and eat it. We can still have “bad parents” if we understand that they are probably to blame for deliberately giving us said “bad brains”. Kind of like the old lore in Jane Austen books, about “bad blood”, that mysterious condition that was the mainstay of such historical novels. “Bad blood” was a vague affliction that confusingly seemed to have its origins in “bad behaviour” and that double whammy somehow affected genes in later generations, making auspicious marriages to dukes and landed gentry really rather out of the question.
Maybe there is a pill for it?
A million girls and young women take tons of laxatives to keep skinny so they will look sexy for porn culture. Goodbye friendly gut biome. Hello major depression. But hey…the doctor says the depression is because of bad parents and he says depression pills will fix it.
A very lucid piece thank you. I like not knowing what my being is. I especially love when my being disolves into other beings in the environoment, like crows and stones and clouds. These beings pull my being apart until I am in rapture.
And Jesus beckonned Mary Magdlene to come annoint his feet…but Lo
She took out an expensive serum.
I suppose that because I have been living with a roof over my head I am more privaledged than someone who is not. Shame on me. And because I have shoes I am more privaledged than the shoeless. Shame on me. And because I am able to pour my coffee in a cup I am more privaledged than someone who has no cup. Shame on me. But are they more privaledged because they have fine health compared to a person riddled with cancer? Shame on them. They must be privaledged too. And are they more privaledged because they can lift someone elses coffee cup to their lips given that another person may be paraplegic and unable to lift stuff? Shame on the able bodied privaledged cup lifter. And are we more privaledged than some dying baby orphan in sub Saharan Africa who has not eaten for weeks. Shame on us.
Shaming everyone who seems remotely privaledged is just a bickering form of therapeutic mockery that never takes responsibility for creating a BETTER VISION.
Joanna, I think you are a wonderful person of vision so please write a long piece on what you would see change about the many systems of oppression you have been subjected to. You deserve nice creams. Lots and lots of nice creams.
Ekaterina, you also are a fantastic writer and discerner of injustices. You deserve nice creams. Loads of creams. We all need nice creams..Robert Whitaker needs nice creams.
Another brilliant piece!
Having been at death’s door with Neuroleptic Malignant Syndrome from an antipsychotic, I was concerned recently to hear that there seems to have been an increase in this syndrome linked to covid 19. The cytokine storm of severe covid is much like the cytokine storm of Neuroleptic Malignant Syndrome (or NMS). Covid and NMS can lead to pneumonia, heart inflamaton and kidney failure and death. On intensive care wards it would be difficult to tell apart symptoms caused by covid or NMS. And since severe covid can lead to a few weeks of delirium that may require treatment for hallucinations, apparently on an intensive care ward an antipsychotic is sometimes used on ventilated patients to make the patients more “comfortable”. My near fatal NMS only took two weeks on an antipsychotic to produce a cytokine storm. I can imagine that if I already had severe covid 19 and a covid caused cytokine storm, it might have been curtains for me if an NMS cytokine storm, from say a delirium treating antipsychotic being given, occurred on top of that. And how would a busy intensive care nurse or doctor know to stop an antipsychotic if they thought the symptoms were only covid. They probably would keep giving the antipsychotic, worsening the cytokine storm to its natural conclusion. There have been over two million deaths from covid…and counting. Were a fraction of those down to NMS making covid worse? Are intensive care staff of the opinion that antipsychotics might be risky? And what of those patients put on them for over a month or so, maybe to also “treat” ptsd? Do they have suicidal moods upon trying to discontinue them, and does that get met with yet more psychiatric medication? It would be interesting if someone could contact the Neuroleptic Malignant Syndrome organization to enquire about these concerns.
Hmm. Maybe if governments paid all nurses the same wages as top consultants get then nurses would be encrusted in their own expensive jewellery. Not saying that’s any excuse for daylight robbery. But also you do get bent nurses, like bent cops, and bent priests. Dogooder vocations are magnets for people exploiters.
l_e cox, I am making soup. I am contemplating your question. It is very interesting indeed so thankyou for bringing it. I am noticing how the act of soup making has a transcendent stillness in an otherwise hectic day. It “feels” like I am doing philosophy as I slowly stir the brocolli and stilton liquid in the pot. Very soothing. Requiring no words, words, words. The mind rests from its factory mill of word production. And into the wordless peace I feel bliss. I am walking the talk. I am doing the philosophy of soup making.
So there is “doing” philosophy, (doing things philosophically), and there is gathering “intellectual knowledge” of philosophy. Both are liberating. But the first doesnt like words, which is a huge relief if you are exhausted. And the second positively revels in as many heady words as can be fit into every conceivable thought. Which is exasperating but exhillarating. I feel “love” is similar. “Doing” love is usually devoid of words and bears no comparison to gaining lots of “intellectual knowledge” about love. “Spirit” can also be a contender in this list. There is “doing” spirituality and reading a whole library on it. The “doing” of philosophy, love and spirit are wisdoms without words. So in answer to your curiosity about how to convince modern people that they might derive comfort, or even transformation, from these, I suspect such “doing blissful wordlessness” would be an anathema to most people, in a mixed up world gone mad on expecting billious quantities of verbiage every minute of the day. They would expect a fact sheet, a lengthy report, an explanation of my soupy silence, a textbook with trillions of words to memorize and spill to a dozen other people to convince them in turn. Infact as I type here I wonder at the word “convince”. I own that convincing is my favourite sport, as it involves winning, but often for me it’s at the price of simple acceptance of the other person. Which is a more beautiful “win” for everyone. So I share your dismay about how to begin convincing a modern person of the healing power of “philosophy” or “love” or “spirit” in a world that increasingly demands exessive words in order to be convinced of anything. A modern person after being so argumentatively convinced may be reeling from not feeling just accepted.
But I do feel the Hippies got it right. They seemed to have a talent for “doing” philosophy and love and spirit in a full bodied non wordy way, as a counterpoint to the verbiage of their day. Maybe they would have clutched at psychology instead, had it come to its current fruition. But I think we need a balance of ALL of these, philosophy and love and spirit and the more psychological and brain appreciations. I just believe that “psych” has become a prevallent language and a prevallent try at a “doing” thing, as in therapy, to the exclusion of the more traditional healings and understandings about life, philosophies that involve less words and more knowing things in your deepest being…just because you know.
Lovely response Rebel. I liked it.
“Never explain yourself to anyone”
quote by Apj Abdul Kalam.
On his video he outlines why. I mention this because right now my radar dish mind finds something odd. It is this. Activism within the survivor population eschews psychiatry and instead turns to the darling of psychology for inspiration about the human condition but not “philosophy” or “mysticism”. It is as if we as a society have bought into an idea that we can only “explain” ourselves if we use correctly post modern words like “trauma” and “growth” and “identity”. Such quasi brain words now eclipse ancient words like “death” and “birth” and “existential longing”. And yet it is ancestral words from philosophy and mysticism that do not require us to become anything other than what we intrinisically are and naturally are. So why do survivor activists not answer psychiatry with a volley of words from robust philosophy or mysticism instead of words from psychology? I suspect it is because activism feels a pressure “to explain” and one can only “explain” with agreed upon mutual language, even in a squabble, in this case the “brain language” of psychxxx.
Activists tend to descend into “explaining” almost through feeling coerced to “talk nicely”. Activists use agreed upon medicalese, instead of turning to their forefathers and foremothers to use the woolly words of profound and sublime collective wisdom, found in philosophy or mysticism. But by doing so, by always people pleasing by articulating in psychxxx words that hasten our opponent to accept our “explaination” a healing stance is not taken, the stance of “knowing” for oneself the truth of how things are with us, and “knowing” it in our own languages. I look forward to reading one or two articles in Mad In America that showcase what the philosophers and mystics might say to the pharmaceutical companies about the human brain. Philosophy tends to accept the way we are as humans, science tends to want to “improve” us. Psychology, ever keen to be “explanitory” and “agreeable” tends to nervously straddle both.
If you eat a poisonous sandwich and spend a whole week throwing up you dont spend ages imagining that you must be throwing up because your girlfriend or boyfriend hurt your feelings, or that you are bending over a lavatory puking up because your mom said something about your aquiline nose in your youth. You dont board a long distance bus, as you cup handfuls of vomit, en route to a weary therapist. You dont book an appointment with a psychologist to get to the bottom of what is really causing you to feel so godforsakenly ill. Instead you deduce that your beautifully orderly digestive organ, the noble stomach, has been fed something indigestible. It is THAT SIMPLE. You have been poisoned. Full stop. But when your brain has been poisoned by medication, toxins that it does not fare well on, the tendency is to regard the brain as mystifying in a way that the stomach is not regarded as mystifying. The brain is indeed a glorious alchemist of mindblowing complexity, but to only regard it this way DELAYS putting down the metaphorical questionable poisonous sandwich. It is as if you get blinded by a vanity that the brain is so magnificent it is impervious to the chemical equivallent of a cricket bat…or a stinking sandwich.
On the one hand there is alot for a person to overcome in terms of decades of propaganda about how dauntingly delicate the brain is and how it needs science laboritories and experts with DIY drills to set it straight or it will never recover naturally. But on the other hand there is a need to trust the brain’s very simple metaphorical and natural gag reflex as if it, like the stomach, is trying to tell an ill person to throw up the latest capsule that may be making them miserable. That trust, in the brain’s natural simplicity has been eroded by centuries of control freaks who say their expertise is necessary. And we buy into the egotism of having a special delicate brain because we dont want a nice workaday ordinary simple one, like the stomach is superbly simple. Human egotism wants to gaze in the therapists mirror and find a brain that never throws up the bleeding obvious.
On maximum doses of antipsychotics for almost a decade. Feeling (dont want to use the triggering word here) “drastic” every day of those years. And I do mean EVERY DAY.
Been off antipsychotics and all meds for three years. In all those three years I have NEVER EVER EVER felt “drastic”. Indeed, I feel happy every day. Where is my glossy advertisment? Where is my shiny clinic success poster? Where is my BBC interview?
My kind doctors reflexively and sadly treat me like an embarrassing fluke for doing well off antipsychotics. An anomally. Now they disbelieve me when I say I did actually feel “drastic” every day for almost a decade, or they disbelieve me when I say I feel great now. Sometimes its both in the same consultation. I have a number of friends stuck on antipsychotics. Every time I phone them they are saying they begged their doctor to increase their dose. It is like watching alcoholics begging for more drink. I know my friends are doing so because the terrible effects of the antipsychotics bring them to a point of immobilization at being able to stave off mental torments. As a schizophrenic I feel that when you take away the stiff chemical mummification on antipsychotics you have better freedom of movement to divert your attention onto pleasant preoccuptions. One friend is very smart and I have often tried to nudge her to reduce her dose, but the horror she imagines about doing so, which I suspect is her horror at possible doubling of the antipsychotic effects she experiences and not so much her mental condition, sends her deeply defensive about what I am suggesting she reads up on and researches and explores. And so she also tends to want to “not believe me”, my fellow schizophrenic friend. And so I have to listen to her endlessly go on about feeling “drastic” every day and detail her latest brain frazzling increase in antipsychotics and I can do nothing. And doing nothing is a dreadful feeling. And so I give up talking to her about maybe reducing her upscale in meds. I just go “yeah yeah yeah” in phone calls because I am helpless to do anything for her. And the guilt and distress of being able to do NOTHING for her feels, I imagine, a bit like how a psychiatrist may feel when the penny does indeed drop and they eventually do believe that some of their patients seem happier off antipsychotics. My friend is a leaper. Knowing that antipsychotic withdrawal syndrome is a discrete madness all of its own, a study in months of agony, with no help and no hand holding team of well wishers, I might as well push my friend off the Intenational Space Station. I feel utterly CARE LESS in suggesting she might take a peek at coming off. It might kill her to come off..It might kill her to keep increasing her doses. I think many psychiatrists are in a similar double bind.
Which is why I feel disinclined to demonize psychiatrists, and not just because I dont demonize anyone, but because I think psychiatrists have waltzed into a mess not always of their making but through institutional trickery and scientific deceit and they dont know how to help the people they pushed desperately questionable drugs on. My friend feels uplifted when she embarks on a new batch of pills, merely in the placebo weeks, and this is enough to keep her on this side of life. And maybe its enough visible improvement for her psychiatrist to turn away from the nightmare prospect that he is not really helping her “live” that life in any way but “drastically”. It would take huge innovation and planning to actually tease my friend down from the tall building of her dizzying doses. As with trying to encourage alcoholics to reduce or come off their poison, most people are too crushed by their own problems to devote months of round the clock care to help the antipsychotically ill wean off. And so it is down to survivors to reach out to our friends. And it is down to psychiatrists to take the first bold step of actually “believing” the wellness of people who have come off antipsychotic bioterrorism and no longer feel “drastic”. But I guess blinkers help a person sleep better at night.
Peter, I have cheered you on from afar for years. This is a lavish yet crisp article. I like it very much. Perhaps I am ignorant of how “scientific evidence” is extrapolated but I should find it mysterious if it stems from a patients feelings. Applying science to feelings seems a contradition in terms given that feelings are such slippery fish for the feeler to put their finger on and for the examiner to deduce. My feelings arrive in me as packets of feelings or mushes of feelings. I can barely tell one feeling from its adjacent feeling or the feeling emerging from it or the one ebbing away. And some feelings are too awful to bear and acknowledge, and so I tuck those under a rug and hope gueats dont trip on them. I tell myself fictons about my real feelings every day, to evade them, or select only acceptable feelings, or doggedly wait for myself to become splendly devoid of messy feelings. Such exuberant inner acrobatics is what enriches us people and keeps us delightfully full of mystique. Along comes science, with its fetish for the truth, tweezering our exact feelings into pharma studies or precisely separating them out in pincer grips, for other types of research. Shiny evidence is published from our original mixtures and mushes of emotion. There is a tick box for “sad” and a tick box for “sleepy” and a tick box for “fearful”. But when, in the past, I ever filled in such questionaire tick boxes myself, I often felt so glad that someone was speaking to me and asking me exciting bold questions, that I looking back, I could not honestly say how I felt, I often just joined in the “hunt the feeling” euphoria emanating from the interviewer as if together we might endeavour to make the world a better place. There was almost a romance to it. But it seems absurd to me now that a scientist of sorts was ever asking me, “me”…a complex system of impulses and conditioning and hopes and dreams and other things unscientifically chaotic, to “describe”, in the same accurate way a thermometer descibes body heat, my exact feelings. And based on my ability to give a precise answer, along with say two hundred of my cohorts precise answers, about whether they were “sad” or “sleepy” or “fearful”, suddenly a drug would be riccochetting out of a dozen laboratories by the billions. It is as if patients are asked to tick a box and cause a global pill to be in the pockets of multitudes just because their pen hovers for a fraction of a second over the word “sad” or “sleepy” then comes to ink impulsively or vaguely over the letters “fearful”. And what is to say one person’s sense of “sad” bears no relation to the next person’s idea of that word. So why does science call that tick box statistical grand sweep “evidence”? And then when you factor in the possibility that a person might not be feeling “sad” before they went on the pill just because they “lacked” what the pill brought but “sad” because nobody in their neighbourhood ever ever ever asked them how they were feeling…it all seems comical and tragic to me. It seems rather farcical to do “science” on feelings, especially when the scientist is also awash with some of the same mysterious and mushy messy feelings. It becomes like supernatural flights of fancy with a clipboard.
I personally love a rant. I will listen to an honest, impassioned rant any day. Ranting is “feeling” talk. But I did not find your article ranty at all. Not ranty enough. Though I like everything you say. For me, I read the word “culture” in your article as “cult” just to see if it conjured a better fit and it does. The abusive cult seems to want to control just about everything we are and make us in its own likeness. But it is a hydra with many heads when ìt speaks through the mouthpiece of the internet. People get confused and think the internet IS the cult, and that gets scary because it seems vast and full of menace and mobs who know where everybodies grandma lives. This troubles us about the cult and fills us with dread if we dont try to soften it or make it love us all. So we tune in to its announcements night and day, and a billion heads all shouting at us to change who we are and fix “the world”, a cult always wants us to mend the world, little old us, rattling with our psych meds and having breakdowns. We buy into the idea that our breakdowns are caused BY the unfixed world we have to sort out immediately by reading whole shelves of logical undigestible factual books, even when we are ill. Cults always demand we get their many books or papers or news reports. Cults demand we abandon ourselves for the greater good, which is usually a cabal at the top. But it is a falacy to think the internet IS “the world”. You are “the world” and coming away from a cult that is the hardest thing to prioritize fixing. If you are fixed you are more likely to be emotionally healthy and the emotionally well are better able, ironically, to “actually” care and “actually” save everyone else in the world, the real world, not the overwhelmingly grotesque apocalyptic horror story of the world that the million voices on the internet cult yells is real. I am not saying the real world does not have atrocious problems that demand justice and remedy. I am saying a cult often uses that to drive people to despair and shame about being just who they are. In summary I see culture as becoming a cult both dizzying and controlling, via the amplifier box of the internet every human has in their pocket, like a pocket bible or cult manifesto, updated every hour. But I see that cult as NOT the real world. The real world is just outside your window, in the sunshine and flowers and trees and emotionally healing things that dont want to control us or challenges us or throttle us with endless headachy logic and scholarly texts and studies. The real world is in the gentle rain and breezes and birds and fluffy clouds that make us better people.
But I am new here and that is just my personal response. And before anyone rushes to pick a logic squabble over some wrong use of a fact or word, I will say I am just a weary woman….a weary weary woman.
What I like, Mwati, in your recounting of your experience is the way your tenderness comes across. You speak of the troubling nuances that are at the heart of any environmental disturbance. The nuances unsettle the healing of prior trauma almost more than spectacular random events. Most psychiatric hospitals seldom think to make their environs places of tenderness and solace, nor do they consider the way that what most people perceive of as “disturbing” is often subtle. Staff regard such disturbances as supposedly inconsequential and signs of just illness. They don’t seem to have a grasp of the word “creepy”. Its as if they think the patient lives in a wraparound world of creepiness and is thoroughly used to it. As if creepiness is their home from home. How can sincere tenderness ever be given to patients who have been dismissed as too haunted to receive it?