Thursday, April 29, 2010

After Her Brain Broke

After Her Brain Broke: Helping My Daughter Recover Her Sanity, by Susan Inman (introduction by Michael Kirby, Chair, National Mental Health Commission of Canada; with endorsements by E. Fuller Torrey, MD, Daniel Kalla, MD, Stephanie Engel, MD and others)

I ordered this book, not because I thought I would agree with it, but because there is actually another mother out there who has written about the mental health diagnosis of her child, which in this case is kickstarted by Paxil for some kind of depression/difficulties, thus raising bipolar, which then becomes schizoaffective, schizophrenia and OCD. With that many diagnoses, I would have lost my faith in psychiatry much earlier than I actually did. Susan Inman has not lost faith in psychiatry, only with the kind of psychiatry that doesn't come with a prescription. If you are a person, like I am, who believes that schizophrenia is not a brain disease and that medications are ruinous in the long run, then this book is not for you. I am dismayed about how heavily the author relies on E. Fuller Torrey. Many people feel that the references cited in this book, including E. Fuller Torrey, Dr. Nancy Andreasen, and the National Alliance on Mental Illness (NAMI) have contributed to the rise in the overuse of antipsychotic medications today.

Mothers come in all shapes and sizes and political leanings. If there is one thing that the author and I might be able to agree on is the dismal state of psychiatry and how badly it has served both patients and families alike. Where we differ is in the details. It would come as no surprise to anyone since E. Fuller Torrey endorses this book, that Susan Inman fully subscribes to the broken brain theory of mental illness. The title strikes me as an homage to psychiatrist Dr. Nancy Andreasen's book, The Broken Brain. Now even Dr. Andreasen has started to warn about the dangers of long term use of antipsychotic medication, something she helped promulgate. That's no help to the people who have suffered under this regime, but hey, again, that's how badly served people are by psychiatry. Susan Inman, despite the ten different medications her daughter has been on in about as many years, still clings to the idea that a better drug will be invented.

I can excuse that belief to some extent because the broken brain biochemistry model is what people have been told for decades by doctors they are supposed to trust, and families are desperate. However, my son and my family and others are the products of the NAMI/Torrey/Andreasen cabal that insists that medications are the only way to deal with schizophrenia. We suffer at the hands of doctors who refuse to consider that medications aren't helping and are actually hurting people's chances of real recovery. The doctors weren't honest with us. They never clued us in that there are competing theories of mental illness, and that medication is not always the way to go. This is called "full disclosure" in other areas of endeavor. Neuroleptic medications are a bitch to withdraw from. Telling the doctors that weight gain, increased risk of diabetes, tardive dyskinesia and early death is unacceptable when there are other avenues out there falls on deaf ears.

I have a hard time with Susan Inman's other main point (and Dr. Torrey's): That the family background has nothing to do with a mental illness. She seems unwilling to even remotely entertain the idea that maybe there is something in the family environment beyond just a medical diagnosis of bipolar and epilepsy in distant relatives, that might have something to do with the rage and suspicion that her daughter spat back at her. She is upset with anybody who seems to even hint at this. Like it or not, most people labeled mentally ill, I have found, do believe it is their family that contributed to their breakdown. (People don't listen to mental patients' actual complaints.) No, the problem is with her daughter's biochemistry, she asserts. The family is not dysfunctional, her daughter is mentally ill. She bristles at the suggestion of Expressed Emotion, as one of the doctors in a family education class spoke about. She reasons that she and her husband have been very careful not to criticize their daughter. The problem with Expressed Emotion, in my opinion, is that it is a concept that nobody has bothered to properly explain and therefore nobody really knows what it is about. It is a concept that I believe is valid, and is much larger than the family criticizing (or not) their relative. It is also the emotion around being told that you are mentally ill and that you must accept your sickness. Organizations like NAMI do this very well. What it tells the suffering individual is that there is something wrong with them. How can someone get well if they are constantly told they are sick and that they must accept that they are sick or they won't get well? That is like a school teacher telling a child that they are stupid, but if they want to do well, they must first admit their stupidity. This approach is discouraged in every other area except mental health, apparently. Pity is also Expressed Emotion. So are medications (feeling singled out trauma associated with being fat, drooling, unable to drink alcohol when everybody else can, etc.). Expressed Emotion can be delivered by doctors and society. (Schizophrenia is the Diagnosis of Doom.) I had to find out about Expressed Emotion for myself. It is not mentioned much these days for exactly for the reason that Susan Inman found objectionable. She writes: "Fuller Torrey sees a lot of this work as just one of many efforts to find new ways to blame families." Really? If anything, I think that family background has been unexamined for decades for fear of offending people.

I'm a mother, too, and I may not be wild about people hinting that maybe I should take a look at myself, but what I cannot understand is someone who isn't intellectually curious and fearless enough to be willing to investigate the possibility if it could result in breakthroughs for her daughter. Yes, there are good therapies that address this (even for schizophrenia!), but that would mean, of course, that they might tread into family background. Susan Inman refuses to go down that path. She paints an idyllic but sketchy portrait of family life. How many of us are that fine and noble as parents? I am ashamed of things I have said and done in moments of anger when my children were small. My son's childhood was normal enough, but mental illness is a lot more nuanced that what is on the surface. People on the outside looking in might think that ours was a normal family, and it was, but it isn't really. No family is normal. None. What is so hard about that?

Susan Inman has such fears about anything less than a perfect family for her children that I fear she has not stretched herself enough to be honest with her daughter or herself. A holistic person would feel that the person with the label is on to something, even if not understanding the root of it. Psychiatry has been too busy with the prescription pad in the second half of the last century to build on the base established by Freud, Jung and others in the first half. Freud appears to be utter rubbish to her. She has bought the medical model. She routinely dismisses the idea that there is another side to this. When a member of the Vancouver Playwrights' Theatre Centre writes a letter objecting to the terms of the guidelines of the conference the author is sponsoring, saying that there is no evidence that schizophrenia is a neurobiological disorder, she portrays the basis for his opinion as mental illness being invented by psychiatry and pharmaceutical companies to make money. Full stop. No acknowledging that this is a widely held opinion by many thoughtful people. Most people have no opinion about schizophrenia unless they have an intimate involvement with it, as I would assume the letter writer has. She sees his complaint as romanticizing mental illness. This is what she calls an anti-science approach, which makes me sad because science hasn't been especially good to her daughter or my son. When her daughter manages to enroll in a sociology class, she discovers to her horror that the teacher tells the class that pharmaceutical companies in cahoots with psychiatrists have made up a bunch of mental disorders for which there is no evidence. Well, isn't a first year college course (especially sociology) exactly the kind of place that should challenge your closely held assumptions? Not when it comes to mental illness, I guess.

To Susan Inman's credit, she is tenacious, but in a completely opposite way than I would go. She's got involved with NAMI to fight the stigma. I said NAMI perpetuates stigma. Stigma will remain as long as people are not getting better. "Science" has enabled people to remain mentally ill and now it wants mental illness to be accepted by removing the goal posts. NAMI is an organization that encourages relatives to continue to medicate their relatives, thus putting real recovery even further out of reach. U.S. Congressional investigators have determined that, in recent years, the majority of NAMI's donations have come from drug makers. The disclosure came about after longstanding criticism of NAMI for coordinating its lobbying efforts with drug makers and pushing legislation that also benefits the pharmaceutical industry.

To illustrate what a colossal train wreck the biochemical model of mental illness is, it is interesting to see how dosage is viewed in different countries. Of course, recommended doses are changing yet again, so what Susan Inman and I were told a few years ago is not what we would be told today, but here is her experience. She goes to the Menninger Clinic in the United States and is told that the level of meds her daughter was on in Canada was not high enough. Doctors in the United States administer much higher doses of antipsychotics early in the treatment because they have found it more effective in stamping out psychosis. This causes her to worry, naturally, that it is too late for her daughter. In Europe where we live, the doctors told me that in North America the doses are too high and that in Europe they have found that minimal doses work best. I am not thrilled with the European logic, either, because what is actually considered a low dose? If someone passed me an antipsychotic and urged me to try one, even at a low dose, I would decline. I don't think I would function very well.

Kudos to Susan Inman for being a mother willing to write about a difficult subject. I have wrestled with the rating I want to give this book. It's a gripping read. My hesitation is that when someone first is given The Diagnosis of Doom the doctor may suggest that you read E. Fuller Torrey, and now maybe they will include Susan Inman's book. If you want to actually get over your diagnosis, you will have to look elsewhere. The web is full of self-help advice from people who've been there and emerged transformed. No praise to this book for perpetuating the NAMI biochemical "just take your meds and don't even bring up the family environment" version of mental illness. Schizophrenia is not like any other illness. It has to be tackled with more imagination and respect than just administering drugs and telling your relative that it's brain damage. Refusing to recognize the importance of the family background will guarantee the persistence of the purely pharmaceutical model and extended mental illness.


  1. I started a comment here, and then took it over to a rambling post on my blog, and have linked to this article for it.

  2. I can't help but think of Alice Miller when I read this post - thanks btw for posting about her death, I didn't know. Both the NYTimes obituary and others I've read almost attack her for "blaming" parents, totally oversimplifying and distorting her work. Sickening. All she did was pointing out that we're altogether, children and parents, victims of abuse, and that we won't get anywhere as long as we repress, respectively deny this truth. And it can't be pointed out often enough, IMO. The biological model is a way to repress, respectively deny. I bet, behind the idyllic family facade Susan Inman is so busy painting, we'd find tons of skeletons in the closets, if we were allowed just a peek. Each time I hear someone bragging about what a wonderful childhood in what a harmonic family they had, I get somewhat suspicious...

  3. The curious question is what is it exactly that was abusive in our parenting?

    Certainly sexual, physical, and emotional abuse may all be catalysts where perpetrated by a family member or someone else. Interesting enough however not all victims of these types of abuse will become psychotic.

    It appears clear that the individual has a poor self image, is insecure, is fearful, does not feel connected.

    It occurs to me that a factor is these individuals are undisciplined and do not understand where the boundaries are in respect of their behaviours. They were not consistently taught what was acceptable and unacceptable in respect of their conduct. It also occurs to me that these same individuals for the most part are highly creative and that because the physical boundaries of their behaviour are not clearly understood that the boundaries between real and imagined, conscious and unconscious are obscured as well.

  4. "It appears clear that the individual has a poor self image, is insecure, is fearful, does not feel connected."

    Our Family Constellation Work, which is based on the work of Bert Hellinger and others, showed us that some individuals are sensitive to family "hurts and transgressions" which can go back generations. One example used, which is beyond most people's abiltiy to understand, is of a family in Brazil that used to own slaves (generations ago). The point was that the only person who felt traumatized by this or even was sublimally aware in the family was the person with schizophrenia. This defies most people's ability to believe, but that's what Family Constellation Therapy teaches. We are all impacted by our family environment. Sexual abuse is way too obvious and often erroneously linked. Unfortunately, people misinterpret abuse, and they think "there was no sexual abuse or physical abusem therefore the trauma theory is nonsense!"

  5. Looong comment (sorry), therefor in two parts: 1.The question is, why are some people more aware than others, or why do their defence mechanisms (repression/denial) break down at some point (="psychosis"), while others' don't? I don't think, this is something that just happens, if it's because of genes, or a lack of moral ("undisciplined"). French postmodernist analysts Lacan and Kristeva say that whether a person reacts with what formerly went under the umbrella term "neurosis", or "depression", on the one hand, or "sz"/"psychosis" on the other, depends on how anchored the person in question was in language, that is whether she reached to find her place in time and space (boundaries), and to which extent, before the insecurities (sic) took over. - Laing is actually on to something very similar when he talks of a lack of "ontological security" in people labelled "sz".

    Someone who never reached to establish a "safe" relationship with language (that is, a relationship where the signifier is identical with the signified) before their faith in language was undermined (cf. abusive relationships where words often don't mean what they say, and also Laing's "mystification", and Bateson's "double bind") will have difficulty developing safe boundaries, and they won't feel connected, since it is through language that we become conscious of ourselves, understand ourselves and the world. Something that could be said to distinguish "psychosis" from everything else (although I don't think there really is any clear distinction, "psychosis" lies on a continuum with "normalcy", IMO, and nobody is 100% anchored or not anchored in language) are the "symptoms" that are referred to as "formal thought disorders", and which all more or less illustrate the loss of connection between signifier and signified (= words lose their meaning), characterizing what Kristeva called "psychotic speech", which btw and apropos of creativity lies end to end with "poetic language".

  6. 2. From my own experience I can say that I used to refer to words as "arbitrary (sound) patterns", freely exchangeable, with no unambiguously defined meaning - and I used them that way. While at the same time I felt boundless, not defined in any way, so to speak, myself (cf. "depersonalization"), and often experienced the world in a similar way ("derealization").

    I often hear people say that, yeah, but there are people who suffer tremendous abuse, and still, they don't become "psychotic". Or also that the fact that not all children in a certain family become "psychotic" would make the trauma model unlikely. These "arguments" are based on a - very - oversimplified view of the problem, of human nature in general, and they do not hold good on closer inspection.

    Whether someone manages to establish a safe relationship with language, and through this with themselves and the world, or not, whether for instance someone reacts to trauma with "ADHD", "depression", PTSD or "sz", depends on countless, apparently insignificant factors. Time obviously is one of them. To render a person's relationship with language sufficiently insecure so as to make "psychosis" a possible result, insecurities need to manifest very early, during the first six months of a child's life. And since parents aren't robots, since they are human beings who react to life events, it is only logic that the same parents may raise ten "normal" children, and one who becomes "psychotic". Simply because something happened in the life of this kid's mother (and father; and stuff tends to happen all the time, that's what's called "life"...), that had them in some way treat this one child slightly different from how they treated the others, with maybe just a little less attention for this kid's needs during his/her first months of life. The child then will react to this, well, emotional neglect, in most cases with withdrawal (cf. parents of people labelled "sz" often will tell you, this child was "different" right from the start - while they interpret this "difference" as an early sign of the alleged "illness", not as the child's natural reaction to the parent's emotional absence/distance in his/her life -, much more quiet, not as demanding as his/her siblings), which reinforces the parent's inattentiveness towards this child, and voilà, there you have the recipe.

    There are a lot of other things that play in, for instance whether someone had something/someone in their life that could provide at least a minimum of security where the parents failed (and I'm sorry that I have to use words like "neglect" and "fail", because I know that, with a very few exceptions, all parents do the best they can, and I certainly don't want to accuse anyone of deliberate abuse/neglect), and nothing is as simple here as the above mentioned "arguments" want it to be.

  7. If we believe that the fetus "hears", then we would have to include the time spent in the womb as part of the environment. Do we go even further back than that or further afield? Many mothers report that their babies were a bit like floppy dolls, e.g. seemed unresponsive. Abram Hoffer notes this in one of his books. I can vouch for that and I think the origin was in the womb. Why Chris hardly moved and arrived 27 days overdue is a mystery, and that's why I believe that there is often more to this than the early birth environment. Early birth environment, yes, but more, too.

  8. I agree, Rossa. My mother's mom fell ill during my mother's pregnancy, and died only a week before I was born, actually ten days early, which I imagine may have been caused by my mother's stress level; I probably couldn't stand the cortisol level in there anymore :D - while the somewhat symbiotic, but also problematic relationship between my mother and grandmother didn't make my grandmother's death easier to deal with for my mother. Both this and the fact that the marriage of my parents had gone down the drain - although no one wanted to admit it - a long time ago, didn't exactly make my mother a happy woman while she was pregnant with me.

  9. Interesting discussion. I am struck with a few thoughts:

    1) Human beings are incredibly resiliant. Even for a considerable percentage of those diagnosed schizophrenic this resiliance allows them to recover fully notwithstanding their experiences and their limiting beliefs. (This recovery best occurs absent biochemical interventions.)

    2) Space and time are human fabrications. Other living organisms are not in tune with the concepts of space and time. They live entirely in the here and now. I agree that language suffusion is key in establishing a false relationship with space and time. I think that our relationship with space and time is a precondition to assigning any significance to the psychotic state. Other living organisms experience psychosis however it is of no interest other than in the moment to their peers.

    3) Neurosis, psychosis, and any other number of designated mental illnesses, are responses to real or perceived experiences that threaten the organism. Other organisms will adapt dysfunctional behaviors where they are not in synthesis with their natural environment. (i.e. animals warehoused in confined spaces in zoos.)

  10. Yes, humans are incredibly resilient but it bothers me that people who have been there say that recovery occurs best off the drugs. This is hard for parents like me whose "children" were given these drugs as a matter of course when they had their first episode. Now, the drugs are the problem as we are told that it would be better to never be on them, if that is in fact what people are saying. There is absolutely no place to go to heal without the drugs, if the situation gets out of hand as it did with my son a year ago. I did not want him back on the drugs, but what were the options? I'm not trying to quarrel with you, I abolutely agree with you, but where is the help for people like me who don't want to go the drug route? Now, I worry that my son will never recover or not recover enough because he was given the drugs in the first place. This is a real concern and there seem to be no programs that give the family a break while not medicating the patient.

  11. There's no question. He is capable of recovering notwithstanding the fact that he has been prescribed psychiatric drugs.

    The key is establishing an authentic human connection through relationship, the pursuit of goals that allow him to apply his natural full potential capability and success at achieving attainable and measurable goals.

    You have stood with him every step thus far and are to be commended for your support and loyalty.

  12. Anonymous: I wholeheartedly agree, that time and space - and verbal language - are artificial, cultural constructs that do not really exist. Anyhow, I think, we all need to go through the experience of time and space - and verbal language - in order to become conscious and see the ego as what it is, so that we can let go of it. Postmodernism, or -structuralism, seems to me to be stuck with the ego, and to regard time, space and verbal language the ultimate, while it only is a stage, but nevertheless a necessary one, on The Way. "Psychosis" on the other hand is never getting the chance to enter, never mind go through, this stage (cf. "regression" in "psychosis" vs. letting go in consciousness).

  13. P.S.: Let me put it this way: I had to know my past, that is I had to come to terms (as in verbal language) with it, and find out where I stood in relation to it, in order to be able to let go of it. You can't let go of something you don't know what is. All you can do to escape identification with your past when it is unknown to you, is regress.

  14. I agree the family SHOCKS do cause trauma in some of the children....

    I DO believe GOD can heal it all......and we can be 100% restored to sanity.......God made our brain , God made the drugs........God alone knows what help we need..........

    Praying for GIFTS OF THE HOLY SPIRIT ....has helped a lot as does reading Scripture.

    Also exercise and Meditation helps to heal us.

  15. Let's learn more about brain science,before swallowing the unproveable, magical-thinking ideas regarding a perceived social cause of schizophenia.

    Let's be intelligently critical of sociology. This soft science has no place in the study of INDIVIDUALS, much less hypothesizing about the cause of mental illnesses.

    Sociology should stick to studying group behavior as it did with the important Obedience to Authority theory. That's where sociology excels.

    Stay with that,sociology. Don't meddle in places where you can confuse vulnerable people by promulgating your untestable, never proven hypotheses--mostly based on Freud's centuries-old,untested musings. This,at a time before science had the evidence it now has about the living brain, which would have challenged and corrected him.

    Read Freud's primary research: Little Hans and the Wolf Man. You will be surprised that some professionals still cling to Freud's assumptions about human nature.

  16. June - "Science" hasn't cured my son. I expected more from it and it couldn't deliver. I was told at CAMH in 2004 that "big breakthroughs" were just around the corner, maybe five years away. Well, where are they? In the meantime, my son had a life to live and no parent should wait around for "science" to get it wrong, yet again. I'm sure you are aware that neuroscientist Nancy Andreasen, who promoted the damaged brain model and the need for medications, suddenly changed her mind, (science is always doing this) and realized that the drugs actually cause brain damage. Why should my relative be at the whim of science? Your paycheque depends on having a clientele of vulnerable people. I have gotten to know a lot of these "vulnerable" people who have recovered, and one of the reasons they probably did is that they refused to see themselves as mental patients. They also read a lot of books written by sociologists, psychologists, Buddhists, humanists that gave them the guidance that science failed to provide. Sincere thanks for your message. I'm glad that people promoting the humanist side are beginning to be noticed.
    For the benefit of readers: June Conway Beeby is Executive Director Ontario Friends of Schizophrenics
    Toronto, Ontario M4A 2W3

  17. May I please correct Rossa Forbes?

    I retired from Ontario Friends of Schizophrenics more than 15 years ago.

    But while I was Executive Director, I had the opportunity to learn a great deal about the reality of schizophrenia. This added to my life's experience of watching my son Matthew suffer from this disease which caused him to kill himself.

    I can only imagine your sad and frustrating journey to help your son. From one mother to another--I know your pain. I hope he is doing well.

    I embrace you.

  18. June - Thanks for the correction. A quick check of the internet makes your former position look quite current. So, my apologies for my getting it wrong. Assuming you are new to this blog, one of my main points about schizophrenia is that I am tired of the pervading sadness that surrounds any information on schizophrenia. The sadness stifles hope and causes both "patients" and relatives to assume a poor outcome from the start. It forces them to run for the meds and to put too much trust in their doctors, when there is much one can do on one's own. I did a quick check of the presentation you gave (to the Ontario Legislature?) in which you indicated that drugs shouldn't always be the first line of intervention in a hospital setting. The more sad stories people hear about schizophrenia, the more they assume it is hopeless. Losing a son is horrible. To me, it is a failure of psychiatry. They've been hiding behind brain chemistry for far too long and demonizing those of us who see the possibilities outside of the medical model. My son is doing well, but it's been a long haul.
    Again, thanks,

  19. Wow June, that sounds exactly like the Danish shrink I some time ago heard say on TV he'd seen some people, mainly abroad, labelled with "sz", who had gone off their "meds", and it hadn't been an edifying sight, these people didn't have a desirable life. This as an answer to the program's host asking if it were possible for people with "sz" to go off their "meds". Well, I don't know whom the shrink in question has seen, and certainly our society today doesn't provide the support (, not treatment) to everyone in crisis they'd need to have in order to get through their crisis and out of it, and these people aren't always the most edifying sight, especially when they chose their freedom in the street over being subjected to others running their lives at some protected housing program (mandatory "treatment" included). But I would love to see the mentioned shrink say the words he said on TV in the face of someone like Joanne Greenberg, Catherine Penney, Will Hall, Rufus May, Ron Bassman, the former clients of Soteria and Open Dialog, and and and (the list is long), or me for that sake. And make a complete fool of himself.

    As far as brain science concerning "sz" is concerned, this is what Robert Freedman has to say about the "evidence it now has":

    Freedman thinks the state of knowledge requires caution and humility. "Schizophrenia research is full of people who are sure they know what they're doing, and only later do we understand that the whole paradigm was off. Then we look back in amazement at how wrong they had it. I like to think everyone in my generation would be well aware of this history, and be reluctant to say we're there." -Nature (This from a bio shrink in a bio article in a bio journal... )

    Fact is, it has no evidence in favor of the disease model. What it has is evidence of psych drugs causing brain damage, and of trauma to change genes as well as brain structure. Fact is, the disease model is a "never proven hypothesis". What more is, it is a hypothesis made up by people who have no personal experience with crisis, while it at the same time completely ignores the experience of those who are crisis-experienced, and in all regards goes against these people's personal experience.

  20. BTW, and a little off-topic, concerning the Nature article: I find it quite amusing that scientist seem to think adding false results together would provide a correct final result...

  21. Those who advocate science and biology should be capable of demonstrating scientific and biological proof. The fact of the matter is they can`t.

    From my own experience and observation as a parent I agree with Marian and her experiences. The problem (to the extent that we wish to define it as a problem)lies in the context that the individual lives his or her life within. There is a lack of relatedness to others, the occurring world, and self that is held in the beliefs and interpretation(s)of the individual. The individual, in order to cope, formulates his or her own reality to escape the undesirable and unbearable context within which they live their life.

    Subsequently, they are force fed psychiatric help and drugs and the earlier context is transformed to one where their beliefs are altered to a new comprehension: `You have a brain disease. It`s uncurable. It`s going to be a deterrent to you leading any semblance of a normal and productive life, and the only hope in hell you have is to take these drugs.``

    A select few, through their own strength and conviction, their beliefs, and the inspiration and beliefs of those who love them yet again transform their beliefs and context from the limitations described above to screw you...I`m having a will be productive and satisfying and I am not diseased. I do not have mental illness. I am ok and well!

    I believe those who give up and those who commit suicide generally do so somewhere after the transformation to the second reality.

    Marian and others who have transformed to the third reality are the models for what can be.


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