I too had the privilege of taking care of a beloved sister for 50 years , whose life was destroyed by the cruel illness of paranoid schizophrenia . Everything Mr Ornstein wrote is exactly my experience of the illness . I had an advantage in caring , however, that the Ornstein family didn’t . My sister was in Ireland - a small country with surprisingly enlightened government support of mental health , reaching into the smallest communities. . They provided hands-on support and provided a team of professionals when needed to bring Jane to the hospital when her psychotic breaks occurred. We managed to provide her with a decent enough life and she lived until 78 years of age . The last decade of her life was her best . My deepest sympathies on the loss of Matt to the Ornstein family . The lack of support in this country is shameful . Reform is seriously overdue . MWB
My father started having episodes in his late twenties. Could not hold down a job. Then the divorce... an ugly, fighting, parental relationship decline that leaves a mark on an oldest child at the mature age of ten.
Dad hung around for a while, but was more absent than available. He went back to live with his parents a state away. During that time it was clear that his mental health was declining to a more severe state of paranoia with more mild symptoms of schizophrenia. He was already warning me of "the others"... the people out to get him and, he was sure, probably me too.
He eventually fled a DUI charge and moved to the tropical island state where he lived on the streets for 40 years. By his choice we lost touch for most of that time. Today, thanks to Hawaii's attempts to fix their homeless problem, he lives in a state-subsidized hostel two blocks from Waikiki. As his physical mobility was deteriorating he started reaching out to his sons. Clearly he was motivated by the fear that comes with being alone in the world and realizing that you cannot care for yourself. He is 84. His knees and hips are shot from sleeping on the streets. He gets around with a walker, but probably not for long.
We don't really have conversations... he just talks. If I did not cut him off, he would go on for hours on each phone call. He is intelligent and informed and some of what he talks about is interesting enough to hold my attention. But some of it is... well... weird.
He wears headphones connected to a radio most of the time. He listens to a lot of radio. He reads a lot of books. He has pride for his intellectual prowess... maybe trying to patch his regrets for being kicked out of college for his role in a drunken brawl... a tragedy that also led to him losing his baseball scholarship where we was reportedly good enough to be scouted by the pros. He knows sports. Even though I inherited his athletic abilities, my sports career ended after high school with four knee surgeries and my business brain, I could never calculate the cost-benefit for being a knowledgeable sports junkie. He always seems a bit disappointed when talking sports and I tell him I don't follow it much. He is a fire-hose of advice about everything. The point is that he might be crazy but he is not ignorant.
Today he claims people can read his mind and everyone else's mind. He calls it the coconut network. He is stubborn in that belief. I have to gently tell him that maybe he knows things that most others don't; but that I don't have the same views.
But here is my final question. I am the oldest of three sons fathered by this man. The middle one demonstrates some of the same behavior characteristics of his father. But it isn't what I would recognize as a mental health problem. My brother is full functioning. He was married and divorced and remarried. He has a son from the first marriage. He served 20 years in the Air Force reserve. He had a career in IT. I had helped him get the training and helped him get his first good professional job... even though today he denies that I helped him. He retired early (too early in my view) because of his military pension and social security. He was always having conflicts at work like his father. I think he wanted to bail from the working world as early as possible.
But man is he bitter and resentful... has adopted a full-on victim mindset. Like his father he is prone to blaming everyone else as being against him... after him... committed to helping him fail. He is a Bernie Bro and supports Universal Basic Income.
Now I am wondering if there is a personality disorder that sometimes leads to a mental health breakdown. Or, if a series of traumatic episodes (and relative to one's innate coping capability) causes brain pathways to corrupt in ways that manifest symptomatic of mental health issues.
Frankly, I see it... people clutching a victim mentality where it shuts down their will to try... believing that the world is stacked against them... that it isn't that they keep making bad choices based on uncontrolled emotional impulses... but that others are somehow responsible for their choices or their lack of opportunity for other options. It seems they always feel just outside some mainstream of human existence... but the epiphanies of positive growth elude them and turn into epiphanies of excuses and blame... that also seem to become voices that start speaking to them.
How many people on the streets demonstrating mental health symptoms are really just people that have sunk so far down that they have given up trying to move forward? And once a person gets to that point, does mental health deteriorate as the brain rewires to help them simply survive? Is victim mentality the early opportunity for diagnosis?
Certainly there are biological and physiological explanations for the mental health problems within the population; but I cannot help but suspect that some people are simply broken by a series of unfortunate events combined with their inability to cope as well with adversity and trauma... where life is generally always adverse and loaded with trauma. Might we head off some of this mental health challenge by teaching these coping skills early in life?
Critically important testimony as nation and nation’s children suffer consequences of de-institutionalization and shocking denial - including by “mental health professionals” - of the reality of mental illness. Deepest condolences for writer’s personal tragedy
Ignoring our broken mental health system (which is the true culprit behind mass shootings) and focusing on gun control is either asinine, or a political strategy of those with the larger agenda of citizen disarming...But likewise, focusing on a war on drugs, rather than the social reason for citizen disempowerment which causes them to resort to drugs, is a similar political ploy of those who would rather see disempowered citizens for the sake of social control, as opposed to self-sufficient citizens in a more democratic, free, and just America and world...
I am so sorry for what your family has been through.
My 10-year-old is currently struggling deeply. I'm having to face up close and personal what it looks like to desperately want to take your child's pain away, but not know what path is the right path. Which one might help alleviate their suffering at least a little bit? Which one will at least ensure they stay on the planet long enough to figure it out? Worse, I have to make those choices knowing that the wrong path could contribute to making a temporary problem chronic, or leave them feeling so powerless that I become complicit in pushing them toward a bad end. It's terrifying. But at least they're still young enough that I get to make some of those decisions, and am not forced to watch helplessly from the sidelines as you were forced to do as things spin out of control.
Part of what makes this all so painful is that I work with Caroline Mazel-Carlton. And Cindy Marty Hadge (https://foreignpolicy.com/2017/01/16/listen-to-the-voices-in-your-head/). Part of what makes this all so painful is that I've been there myself (https://thesunmagazine.org/issues/496/an-open-mind). And I know there ARE ways people make it through. Yet each journey is unique, even if we're all swimming around in the same under resourced 'pool' of life, and I don't know - in spite of all that - what will help my child live their particular life to the fullest. Hell, right now, I'm struggling with what will help my kid stay alive.
All that said, I feel confident it won't be talk of anosognosia and how best to take away (even more of) someone's power that will get us there. A handful of years ago, I believe it was Xavier Amadour who gave a talk at the National Council's annual conference, and managed to get a few thousand people chanting that word all at once, as if breathing it into reality.
Ano-Sog-Nos-ia. Say it again!
The problem is that - while anosognosia is an actual medical condition when it comes to stroke victims and the like - it is not so much legitimately established in relationship to psychiatric diagnosis. That's not to say that some folks don't lose connection with what's happening around, to, and with them at times, and in sometimes risky or deadly ways. But inaccurately calling that a medical condition is not helpful in a field where so many people are already alienated for how much they've felt lied to, misdirected, and disempowered. One factor in building a successful mental health system is building trust so that people are even willing to engage (see also: Open Dialogue in Finland), and this is not the way.
Sometimes our greatest strength is in at least being honest about what we do know... as well as what we do not. And then agreeing to figure it out together whenever possible, while also being willing to sit in the darkness together until we can find some way out.
I know that sounds romanticized in its way. It doesn't get at all the day-to-day messiness, the exhaustion, or the souls lost along the way. But nor does your talk of Involuntary Outpatient Commitment (euphemistically known as 'Assisted Outpatient Treatment' or 'AOT') get at all the people who feel trampled until their inner fire is extinguished. All the black and brown people disproportionately bearing the brunt of the more severe diagnoses and the tools used to enforce their parameters. It doesn't get at the people who are dying 25+ years younger than the rest of the population *because* - in some instances - of the treatments. It misses entirely the people who were harmed as children by abusers who told them "You are bad if you do not do what I tell you," who then entered a system that also told them "You are bad if you do not do what we tell you," in the name of "non-compliance" who then fell further into the depths of despair for all the echoed messages from their trauma. It doesn't get at all the people who choose to end their life because they've lost so much power in the world and feel trapped in a system where they're only losing more.
It also certainly doesn't get at the reality that the psychiatric drugs are woefully ineffective for more people than not. And yes, that IS science talking. I wonder if you've heard that Norway courts ruled that it is not lawful to force the class of drugs called antipsychotics because their rate of efficacy simply isn't high enough to justify that use of force?
Now imagine for a moment that we have two pathways. Let's say that one pathway is the road of force, of "AOT" as you call it... Of focusing on being responsible for people, no matter how many times its thrown in our face that we can't truly control them. Then there's the other pathway... Where we don't ever force people. Where we see ourselves as responsible *to* one another to be in that darkness together and jointly find the way out. Where we do the best we can with what we have, but always prioritize choice.
We will *always* lose people, but down which pathway are more souls loss? From everything I've seen and known as someone who has struggled, as someone who works with so many people who have struggled, as someone who has traveled to many parts of the world talking with and training so many people on topics related to hearing voices, suicide, and, yes, as someone who has reviewed a LOT of the science... I will ALWAYS argue we lose far more people down the path that focuses on control and force.
While as you and your wife have pointed out, there may also be some more middle-leaning pathways, it does seem we should be pushing to at least skew heavily toward that one.
No one is arguing that psychiatric drugs shouldn't remain on the table as one of several tools (well, very few people are, anyway). But we need many others that can operate either in conjunction with or entirely separate from that option. In order to get to a point where society actually makes all the options truly accessible to everyone, I hope you will reconsider these arguments that will only perpetuate the idea that only a few tools among the many should actually be held up.
I know that requires you to see through a lot of pain and loss, but I honestly feel like the lives of people like my own child depend on it.
Thank you for this. Freddy deBoer, whose SubStack blog I also follow, posted a very powerful and moving response to the NYT Magazine essay. He has suffered from mental illness for all his adult life, and freely admits that he would not be able to function without the medications he receives for his condition. Well worth a read, although those who know of him will know that his and Mr. Ornstein's politics are very different.
I would like to briefly touch on an issue that is becoming a concern of mine. That is the one of young people (especially) adopting the belief that having what would have been considered a disability know is "cool" somehow, one that sets one off from the crowd, makes one different. This am aware of this most among those who are "on the spectrum" of autism somewhere. Freddy deBoer has also addressed this in a separate post. There are those who are clearly "high functioning" individuals who have that diagnosis/condition (I would never deny that it is very real, as a retired college instructor.), and also those who are utterly debilitated by that malady. And the ones who deny that it is a "malady", being scarcely affected by it, have come to dominate the conversation.
I was severely incapacitated as a healthy functioning individual in my early 20s by an obsessive-compulsive disorder. I knew my behavior was irrational, was embarrassed and ashamed of it, yet was powerless, without help (and medication) to change it. Thankfully that passed. Even in my worst days, I would have recognized that anyone who suggested that my condition was "cool", and that I should embrace it, I would have regarded as more demented than me.
I am so sorry for your son's affliction and believe the average person sees only the symptoms of mental illness and haven't got a clue of what is going on inside the brain and how torturous it can be. But I can't believe their is a movement to stop treatment. Who do these people think they are? And just as science is leaping in the development of new drugs. It's another self-help fallacy. Everything you say about drugs working or not working is on point. But a health system that allows physicians to giving adolescents puberty blockers is already lost in experimentalism.
PS: I didn't read the NYT article so maybe it's only a lay movement. But those have proven strong enough to affect medical practice.
I too had the privilege of taking care of a beloved sister for 50 years , whose life was destroyed by the cruel illness of paranoid schizophrenia . Everything Mr Ornstein wrote is exactly my experience of the illness . I had an advantage in caring , however, that the Ornstein family didn’t . My sister was in Ireland - a small country with surprisingly enlightened government support of mental health , reaching into the smallest communities. . They provided hands-on support and provided a team of professionals when needed to bring Jane to the hospital when her psychotic breaks occurred. We managed to provide her with a decent enough life and she lived until 78 years of age . The last decade of her life was her best . My deepest sympathies on the loss of Matt to the Ornstein family . The lack of support in this country is shameful . Reform is seriously overdue . MWB
A
My father started having episodes in his late twenties. Could not hold down a job. Then the divorce... an ugly, fighting, parental relationship decline that leaves a mark on an oldest child at the mature age of ten.
Dad hung around for a while, but was more absent than available. He went back to live with his parents a state away. During that time it was clear that his mental health was declining to a more severe state of paranoia with more mild symptoms of schizophrenia. He was already warning me of "the others"... the people out to get him and, he was sure, probably me too.
He eventually fled a DUI charge and moved to the tropical island state where he lived on the streets for 40 years. By his choice we lost touch for most of that time. Today, thanks to Hawaii's attempts to fix their homeless problem, he lives in a state-subsidized hostel two blocks from Waikiki. As his physical mobility was deteriorating he started reaching out to his sons. Clearly he was motivated by the fear that comes with being alone in the world and realizing that you cannot care for yourself. He is 84. His knees and hips are shot from sleeping on the streets. He gets around with a walker, but probably not for long.
We don't really have conversations... he just talks. If I did not cut him off, he would go on for hours on each phone call. He is intelligent and informed and some of what he talks about is interesting enough to hold my attention. But some of it is... well... weird.
He wears headphones connected to a radio most of the time. He listens to a lot of radio. He reads a lot of books. He has pride for his intellectual prowess... maybe trying to patch his regrets for being kicked out of college for his role in a drunken brawl... a tragedy that also led to him losing his baseball scholarship where we was reportedly good enough to be scouted by the pros. He knows sports. Even though I inherited his athletic abilities, my sports career ended after high school with four knee surgeries and my business brain, I could never calculate the cost-benefit for being a knowledgeable sports junkie. He always seems a bit disappointed when talking sports and I tell him I don't follow it much. He is a fire-hose of advice about everything. The point is that he might be crazy but he is not ignorant.
Today he claims people can read his mind and everyone else's mind. He calls it the coconut network. He is stubborn in that belief. I have to gently tell him that maybe he knows things that most others don't; but that I don't have the same views.
But here is my final question. I am the oldest of three sons fathered by this man. The middle one demonstrates some of the same behavior characteristics of his father. But it isn't what I would recognize as a mental health problem. My brother is full functioning. He was married and divorced and remarried. He has a son from the first marriage. He served 20 years in the Air Force reserve. He had a career in IT. I had helped him get the training and helped him get his first good professional job... even though today he denies that I helped him. He retired early (too early in my view) because of his military pension and social security. He was always having conflicts at work like his father. I think he wanted to bail from the working world as early as possible.
But man is he bitter and resentful... has adopted a full-on victim mindset. Like his father he is prone to blaming everyone else as being against him... after him... committed to helping him fail. He is a Bernie Bro and supports Universal Basic Income.
Now I am wondering if there is a personality disorder that sometimes leads to a mental health breakdown. Or, if a series of traumatic episodes (and relative to one's innate coping capability) causes brain pathways to corrupt in ways that manifest symptomatic of mental health issues.
Frankly, I see it... people clutching a victim mentality where it shuts down their will to try... believing that the world is stacked against them... that it isn't that they keep making bad choices based on uncontrolled emotional impulses... but that others are somehow responsible for their choices or their lack of opportunity for other options. It seems they always feel just outside some mainstream of human existence... but the epiphanies of positive growth elude them and turn into epiphanies of excuses and blame... that also seem to become voices that start speaking to them.
How many people on the streets demonstrating mental health symptoms are really just people that have sunk so far down that they have given up trying to move forward? And once a person gets to that point, does mental health deteriorate as the brain rewires to help them simply survive? Is victim mentality the early opportunity for diagnosis?
Certainly there are biological and physiological explanations for the mental health problems within the population; but I cannot help but suspect that some people are simply broken by a series of unfortunate events combined with their inability to cope as well with adversity and trauma... where life is generally always adverse and loaded with trauma. Might we head off some of this mental health challenge by teaching these coping skills early in life?
Critically important testimony as nation and nation’s children suffer consequences of de-institutionalization and shocking denial - including by “mental health professionals” - of the reality of mental illness. Deepest condolences for writer’s personal tragedy
Ignoring our broken mental health system (which is the true culprit behind mass shootings) and focusing on gun control is either asinine, or a political strategy of those with the larger agenda of citizen disarming...But likewise, focusing on a war on drugs, rather than the social reason for citizen disempowerment which causes them to resort to drugs, is a similar political ploy of those who would rather see disempowered citizens for the sake of social control, as opposed to self-sufficient citizens in a more democratic, free, and just America and world...
Norman,
I am so sorry for what your family has been through.
My 10-year-old is currently struggling deeply. I'm having to face up close and personal what it looks like to desperately want to take your child's pain away, but not know what path is the right path. Which one might help alleviate their suffering at least a little bit? Which one will at least ensure they stay on the planet long enough to figure it out? Worse, I have to make those choices knowing that the wrong path could contribute to making a temporary problem chronic, or leave them feeling so powerless that I become complicit in pushing them toward a bad end. It's terrifying. But at least they're still young enough that I get to make some of those decisions, and am not forced to watch helplessly from the sidelines as you were forced to do as things spin out of control.
Part of what makes this all so painful is that I work with Caroline Mazel-Carlton. And Cindy Marty Hadge (https://foreignpolicy.com/2017/01/16/listen-to-the-voices-in-your-head/). Part of what makes this all so painful is that I've been there myself (https://thesunmagazine.org/issues/496/an-open-mind). And I know there ARE ways people make it through. Yet each journey is unique, even if we're all swimming around in the same under resourced 'pool' of life, and I don't know - in spite of all that - what will help my child live their particular life to the fullest. Hell, right now, I'm struggling with what will help my kid stay alive.
All that said, I feel confident it won't be talk of anosognosia and how best to take away (even more of) someone's power that will get us there. A handful of years ago, I believe it was Xavier Amadour who gave a talk at the National Council's annual conference, and managed to get a few thousand people chanting that word all at once, as if breathing it into reality.
Ano-Sog-Nos-ia. Say it again!
The problem is that - while anosognosia is an actual medical condition when it comes to stroke victims and the like - it is not so much legitimately established in relationship to psychiatric diagnosis. That's not to say that some folks don't lose connection with what's happening around, to, and with them at times, and in sometimes risky or deadly ways. But inaccurately calling that a medical condition is not helpful in a field where so many people are already alienated for how much they've felt lied to, misdirected, and disempowered. One factor in building a successful mental health system is building trust so that people are even willing to engage (see also: Open Dialogue in Finland), and this is not the way.
Sometimes our greatest strength is in at least being honest about what we do know... as well as what we do not. And then agreeing to figure it out together whenever possible, while also being willing to sit in the darkness together until we can find some way out.
I know that sounds romanticized in its way. It doesn't get at all the day-to-day messiness, the exhaustion, or the souls lost along the way. But nor does your talk of Involuntary Outpatient Commitment (euphemistically known as 'Assisted Outpatient Treatment' or 'AOT') get at all the people who feel trampled until their inner fire is extinguished. All the black and brown people disproportionately bearing the brunt of the more severe diagnoses and the tools used to enforce their parameters. It doesn't get at the people who are dying 25+ years younger than the rest of the population *because* - in some instances - of the treatments. It misses entirely the people who were harmed as children by abusers who told them "You are bad if you do not do what I tell you," who then entered a system that also told them "You are bad if you do not do what we tell you," in the name of "non-compliance" who then fell further into the depths of despair for all the echoed messages from their trauma. It doesn't get at all the people who choose to end their life because they've lost so much power in the world and feel trapped in a system where they're only losing more.
It also certainly doesn't get at the reality that the psychiatric drugs are woefully ineffective for more people than not. And yes, that IS science talking. I wonder if you've heard that Norway courts ruled that it is not lawful to force the class of drugs called antipsychotics because their rate of efficacy simply isn't high enough to justify that use of force?
Now imagine for a moment that we have two pathways. Let's say that one pathway is the road of force, of "AOT" as you call it... Of focusing on being responsible for people, no matter how many times its thrown in our face that we can't truly control them. Then there's the other pathway... Where we don't ever force people. Where we see ourselves as responsible *to* one another to be in that darkness together and jointly find the way out. Where we do the best we can with what we have, but always prioritize choice.
We will *always* lose people, but down which pathway are more souls loss? From everything I've seen and known as someone who has struggled, as someone who works with so many people who have struggled, as someone who has traveled to many parts of the world talking with and training so many people on topics related to hearing voices, suicide, and, yes, as someone who has reviewed a LOT of the science... I will ALWAYS argue we lose far more people down the path that focuses on control and force.
While as you and your wife have pointed out, there may also be some more middle-leaning pathways, it does seem we should be pushing to at least skew heavily toward that one.
No one is arguing that psychiatric drugs shouldn't remain on the table as one of several tools (well, very few people are, anyway). But we need many others that can operate either in conjunction with or entirely separate from that option. In order to get to a point where society actually makes all the options truly accessible to everyone, I hope you will reconsider these arguments that will only perpetuate the idea that only a few tools among the many should actually be held up.
I know that requires you to see through a lot of pain and loss, but I honestly feel like the lives of people like my own child depend on it.
Thank you for this. Freddy deBoer, whose SubStack blog I also follow, posted a very powerful and moving response to the NYT Magazine essay. He has suffered from mental illness for all his adult life, and freely admits that he would not be able to function without the medications he receives for his condition. Well worth a read, although those who know of him will know that his and Mr. Ornstein's politics are very different.
I would like to briefly touch on an issue that is becoming a concern of mine. That is the one of young people (especially) adopting the belief that having what would have been considered a disability know is "cool" somehow, one that sets one off from the crowd, makes one different. This am aware of this most among those who are "on the spectrum" of autism somewhere. Freddy deBoer has also addressed this in a separate post. There are those who are clearly "high functioning" individuals who have that diagnosis/condition (I would never deny that it is very real, as a retired college instructor.), and also those who are utterly debilitated by that malady. And the ones who deny that it is a "malady", being scarcely affected by it, have come to dominate the conversation.
I was severely incapacitated as a healthy functioning individual in my early 20s by an obsessive-compulsive disorder. I knew my behavior was irrational, was embarrassed and ashamed of it, yet was powerless, without help (and medication) to change it. Thankfully that passed. Even in my worst days, I would have recognized that anyone who suggested that my condition was "cool", and that I should embrace it, I would have regarded as more demented than me.
I am so sorry for your son's affliction and believe the average person sees only the symptoms of mental illness and haven't got a clue of what is going on inside the brain and how torturous it can be. But I can't believe their is a movement to stop treatment. Who do these people think they are? And just as science is leaping in the development of new drugs. It's another self-help fallacy. Everything you say about drugs working or not working is on point. But a health system that allows physicians to giving adolescents puberty blockers is already lost in experimentalism.
PS: I didn't read the NYT article so maybe it's only a lay movement. But those have proven strong enough to affect medical practice.