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.