Today’s story, entitled “Living with a Schizophrenic,” comes courtesy of the Catholic News website. I was rummaging around on the Internet to back up my contention that the modern church, using psychiatry, has hoodwinked everybody, including itself, about the biological basis of the “schizophrenia disease.” The early Christian church, through a series of conventions or “councils” as they were referred to then, succeeded in ensuring that correct spiritual thinking came through the organized church, unchallenged by those pesky prophets who were wandering in and around the city gates. Today’s church finds psychiatry a convenient way of making sure that its dogma goes unchallenged.

Mr. Fernando is a Singaporean man who has been caring for his “schizophrenic” wife for over thirty years. He writes in his book, “I am troubled that there is no cure for schizophrenia. But I’m more troubled by the attitude of people towards those with mental illness – avoiding them and stigmatising them – when we should be helping them.”

Since Mr. Fernando reads his Bible, how does he reconcile his modern belief about schizophrenia with the many instances in the Bible where Jesus cured the mentally ill, a.k.a. the demon-possessed? How is it that the Church believes that this is no longer possible? Why isn’t the Church actively more engaged in practicing the faith healings that Jesus told us were within our power?

As a full-time author, Mr Fernando gives talks about being a caregiver to patients, teaching them how to identify symptoms of schizophrenia as well as providing tips, always using his experiences with his wife to illustrate his points. His talks are often encouraging, and he reminds his audience not to lose hope because mental illness can be overcome with regular medication, counselling and strong emotional support from loved ones.

It’s strange that church leaders and parishioners can recite the symptoms of something they call “schizophrenia” while, at the same time, being surrounded in church on any given Sunday by high strung people (including themselves) who speak in tongues, get swept away by religious ecstasy, feel the devil is out to get them, recount Biblical persecution stories and subscribe to the Holy Trinity.

I am always struck by how “mentally ill” bordering on schizophrenia church-goers are (and I’m a church-goer), but its leaders still believe that somehow there exists something called serious mental illness that needs support provided by psychiatry, not the Church.

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(Raymond Anthony Fernando’s book “Loving A Schizophrenic” is on sale at the Catholic News Book and Media, at the Catholic Archdiocesan Education Centre, 2 Highland Road, #01-02. It is also available for online purchase at http://www.rankbooks.com/. It is priced at $15.)

I came across this blog written by an unnamed writer now in his sixties who, from what I have read so far, reminds me very much of Harry Haller, the protagonist of Steppenwolf. In his introductory post he writes about the process of renewal. Below is just an extract from a blog post. You can find out more at Sky Blue Cure.

From Death to Life: A Story of Personality Reconstruction
Is it still I, who there past all recognition burn?
Memories I do not seize and bring inside.
O life! O living! O to be outside!
And I in flames. And no one here who knows me.

Rainer Maria Rilke

This story has been written primarily for a few close friends although all readers are welcome.

Given the nature of the stigma associated with emotional illness, the pharmaceutical bias of the medical establishment and the vast misunderstanding of emotional functions in popular culture it is unlikely that this message would be accepted or even be of interest to most people.

At least the record is made, for my satisfaction , that someone like myself did exist and did transform in an age where this process is relatively unsought and unknown.

I was sick and then I was cured. I was emotionally ill until I was thirty. I was made ill by the psychological abuses of both my family and the larger social world. At the age of thirty my personality changed, I was totally reconstructed. I changed it with help and guidance. The difference in my two lives, my two personalities, before and after, is virtually the difference of life and death. Prior to my change, I was barely emotionally alive yet I did experience states of extreme fear, depression and anxiety. I was able to think and function to some extent but mostly lived either in a state of deadness or extreme emotional agitation. I could not emotionally react in a natural way and so had to avoid most situations that caused emotion. I could not direct my actions or my life to any cause or interaction with others. I could not progress or grow in almost any way. My current personality is as fully emotionally alive with a full emotional range and I have no social fears or anxieties.

Previously, I was emotionally repressed. I was as if dead, yet I suffered greatly as if in an unending nightmare which I could not understand. My conception of myself now is that I somehow died or was murdered as a small child and lived on drifting as a frightened ghost, a dead person yet alive and dreaming a nightmare, a somnambulist, a recording machine that recorded events but could not participate in them. From emotional repression I deteriorated over the years into a fractured personality. I have no sense of “break” from my two personalities, I have always felt a continual flow of self, yet my current self is my full self and I regard my previous self as my dead self. I remember my past before age 30, It was “I” but then again it was “Not-I”. I live now with a strange dichotomy of memories and feelings about who I am. This also makes me a person who is able to draw on opposite types of behaviour to use at I will.

After I changed, over time I realized that I was not the same person. At first, I had thought I was simply “more” than I was previously but I came to realize that I was not only “more” but I was “different”. If I had met my previous personality, I wouldn’t have liked much about him and I don’t suppose he did like himself much either. That’s as it should be.

Our unnamed writer echos Hermann Hesse, who wrote “Not everyone is allotted the chance to become a personality; most remain types, and never experience the rigor of becoming an individual. But those who do so inevitably discover that these struggles bring them into conflict with the normal life of average people and the traditional values and bourgeois conventions that they uphold.”

The playwright David Lindsay-Abaire is quoted in today’s New York Times:  “I remembered something Marsha Norman said at Juilliard,” he said. “She said, if you want to write a good play, write about the thing that frightens you the most.”

As most of you know, I’m writing a memoir about Chris’s and my journey through schizophrenia. I didn’t set out to be a writer, this is my one literary bolt of inspiration, so sequels are not in the offing and I don’t expect to be awarded a Pulitzer prize for great writing. My added value to this generally “misery memoir*” categorized genre is that I approach schizophrenia from an optimistic viewpoint; I expect full recovery for Chris (and me!) and I expect it to come from non-drug interventions. There is an exciting world of help that more people should know about that runs counter to the accepted wisdom today that schizophrenia is a brain disease that can best be treated by pharmaceuticals. “Schizophrenia” no longer frightens me because I learned how to understand its message, however, my initial fright provided the impetus to try to write a good memoir.

Holistic schizophrenia needs a lot more help than I can provide. The competition is almost all on the side of memoirists (see Henry’s Demons* below) who promote the the idea that one day science will finally track down the cause of this “scourge.” Our side needs to be promoted through our own memoirs showing that there is a better way to understanding. There are too many memoirists like Kay Redfield Jamison who set out to convince people that so-called mental illnesses are depressing, lifelong and purely biochemical in origin. We need more memoirists like Jane Alexander, author of Possessing Me: A Memoir of Healing. Now there’s a positive message!

W.H. Auden had this to say about memoir writing: “Our sufferings and weaknesses, in so far as they are personal, are of no literary interest whatsoever. They are only interesting in so far as we can see them as typical of the human condition.”

Many of you are probably already thinking about writing this kind of reflection. If you aren’t, please consider doing so now. The public’s s understanding of how to treat mental illness usually comes from a book or a movie that they read or watched. Together we can challenge the public view of schizophrenia.

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*Henry’s Demons: Living with Schizophrenia, a Father and Son’s Story, by Patrick Cockburn and Henry Cockburn (Scribner, Feb. 1, 2011)

Editorial reviews

From Publishers Weekly

This sensitive story of a family’s battle with schizophrenia looks at the ignorance and stigma that often accompany any mention of mental illness. When Cockburn, a foreign correspondent for the Independent on assignment in Afghanistan, learns his 20-year-old son, Henry, has been institutionalized after trying to drown himself, he tries to understand why his son has had a mental breakdown. The Cockburns, a tightly knit family, are severely tested by the pressures of a loved one undone by his mind and locked away for seven years in a mental hospital. Told in alternate views, both father and son write candidly of the illness, medications, and numerous hospitalizations, along with harrowing descriptions of visions and voices. This straightforward, unsentimental book, is a bold plea for more research and cutting-edge therapies to combat mental illness. (Feb.)
(c) Copyright PWxyz, LLC. All rights reserved.

From Booklist

What to do when the bright and gregarious child you have loved and nurtured suddenly takes to stripping naked and defecating in a neighbor’s yard? Or worse, what if he courts death via hypothermia by swimming in the frigid waters of a nearby river? What could possibly be worse? If that same young man adamantly denies that he is ill and stubbornly refuses all medication that might help him. As a parent you are helpless when your son repeatedly escapes the confinement necessary to prevent him from harming himself. If Patrick Cockburn’s wrenching account of son Henry’s illness is not affective enough, Henry’s guileless divulgence of his personal reality drives home the unrelenting anguish of the families of schizophrenics. More poignant still are the journal excerpts of Henry’s mother, whose nerves are palpably raw from being in the trenches with her son’s illness and a medical community unable to help him. The family Cockburn’s unique take—by allowing Henry a voice in this book—offers valuable insights into mental illness. –Donna Chavez

Apologies to Gianna Kali at Beyond Meds for continously mooching off her post ideas, as I did yesterday, but her post today has inspired me once more. Inspire may not be the right word. I’ve got to vent. Dr. Mark Foster is a primary care physician in Colorado who is often a guest blogger at Robert Whitaker’s Mad in America blog. Today he writes about a teenage patient who’s been on Adderall for years. His father is with him in the examining room and expresses consternation after he gets a lecture from Mark about the wisdom of having a kid on Adderall for 10 years. “But, it’s a disease, isn’t it?” he says to the doctor.

Believe it or not, my sympathies here are with the father, mainly because this post about childhood use of Adderall shows how much people have been jerked around by the medical profession when it comes to mental health. Now, we’ve got a chirpy young doctor telling the old man that he’s got it completely wrong. Pa’s been jerked around since before this guy went to medical school, now suddenly he’s getting a lecture that supposedly everybody else knows but him.

Parents and their idiotic ideas aside, doctors have been the willing handmaidens of pharma and have been only too willing to push the idea that there is something called ADD or ADHD and there’s a medication for it. Consider the opposite. Suppose this father initially resisted putting his child on meds. He’d be up against teachers, other parents who have put their kid on meds, perhaps his own family doctor suggesting that “research shows that untreated hyperactivity leads directly to jail,” and the media telling him that the latest research shows how these drugs “protect the brain.”

So, I often do get angry because I know we’ve really been had and almost no person in a position of medical authority who families turned to in the past twenty years was curious enough or responsible enough to question the sales job.

I just don’t get why Aspergers is categorized as a mental illness. It’s in the Diagnostic and Statistical Manual, so it must be, but I still don’t get it. I “get” why schizophrenia is considered a mental illness, although I don’t agree with labelling it as such. It’s all so confusing, really.

Here’s a story from the Ottawa Citizen about a mother who is not able to hospitalize her son because the Asperger beds are full, but there are spaces at the hospital if you fall under another mental illness category. Note that Aspergers used to be something rare. Now, by bed count alone, it appears to have overtaken traditional “mental illnesses” like schizophrenia in a spectacularly short period of time.

The real reason for being admitted to mental health facility may simply be that your family can’t deal with your behavior any longer. In the absence of helping the whole family find a better way of coping, the one with the label gets time out in the institution and the ones without the label get time out at home.

These days my blog is taking a back seat to my efforts to tidy up the memoir I am writing. I belong to a local writers group who has arranged for members to show a sample of their work to a live literary agent in mid-February. The reason I am writing a book about Chris’s and my experience with holistic healing is because a book is often the best way to get your message across to a lot of people. Even regular readers of this blog may forget the back story or are not able to trace the reason why I believe certain things about recovery. A book follows a logical path and is a handy reference guide.

I’ve placed my nearly completed book on the authonomy website so that anybody can read it and comment on it. Authonomy books are not so easy to read on the screen and, unfortunately, book chapters cannot be downloaded and printed. But it’s there if you would like to get Chris’s and my “back story.”  If you do go to the site, it would be helpful for me if you registered an account and then placed my manuscript on your bookshelf. Your doing so will create a wider audience for my message. Registering your account doesn’t mean you will be flooded with e-mails from authonomy; in fact I rarely receive them.

I have another book suggestion for your shelf. A Moment in Time effortlessly weaves together today’s high level of interest in “new age” dynamics, quantum physics, alternative healing, and the backlash against “Big Pharma.” Set in the late 1990s, it describes the global paradigm shift that is currently under way and follows one woman’s struggle to adapt to change. Her experiences place her at the forefront of new understanding about quantum realities. If you liked The Celestine Prophecy or Dan Brown novels, you’ll find this one promises to deliver much more. 

One of Ian’s and my favorite films is the 1986 BBC television series The Singing Detective. Mystery writer Phillip Marlow  is victim to a gruesome skin disease, the psychological origins of which go back to his childhood. He’s suffering from writer’s block and has landed back in the hospital with a particularly nasty flare-up of his condition.

In this memorable scene, the doctors and nurses gather round him while he is stretched out, hot, sweating and nearly naked on his hospital bed. Marlow begins to hallucinate.

There are many versions on YouTube of the Dry Bones musical interlude, but this one is surely the best.

anosognosia: Lacking insight that you are mentally ill

My inspiration (ramble?) for today’s blog was prompted by reading about the Elizabeth Smart case. Elizabeth Smart was the fourteen year old girl who was kidnapped a few years ago and subjected to daily rape by her captor. The article talked glowingly of how well adjusted she is these days because of the strong support by her family and the fact that “they believed what she told them.” In cases of trauma, a psychologist wrote, it is important to believe that what the victim is telling you is true. Believing Elizabeth Smart doesn’t look like that much of a stretch to most people. I wouldn’t give the family too much credit here for psychological insight. Of course what she told them is true. The supporting evidence is right there in the open.

Well, we all know that apparently this sage advice doesn’t apply to mental health. As faithful reader of this blog, Marian, points out, people “get” the origins of physical trauma, they don’t “get” the origins of mental trauma.  There are many parents who believe in something called “serious mental illness.” I feel very sorry for their relatives who spend a lot of time in psychiatric institutions not getting better. I suspect they remain there because their voices are not heard by the people who count — their parents. The parent prefer to believe their relatives are seriously mentally ill, and rage is what they get in return.

What parent would sit by and let their child languish for years in an asylum? There is something very strange going on with parents who allow this to happen. They are washing their hands of their relative, but they don’t see it this way, of course. From the way many of them go on about how hard it is to see this happen to their troublesome relative, you’d think it was all about them. Yes, it is all about them.

The parents suffer from anosognosia, a refusal to admit that they are deluding themselves and are in need of help. The children are trying to tell them there is something wrong if they would only believe them, and the parents aren’t listening.

“The more people became shocked and worried about him, the more withdrawn he got,” Ms. Castle said.       
                                                                      
This quote about Jared Loughner is from the NY Times. It is a huge indictment of the way people in a mental health crisis are treated, before they seek help and even after seeking help. While I would like to think that medical help will alleviate the shock and worry attitude directed to the person, unfortunately, medical intervention usually exacerbates it. Shock and worry is an example of high expressed emotion and is studies show it leads to people doing less well. High expressed emotion (and its opposite, low expressed emotion) is a term that few parents are familiar with.

If we view the person as weird, sick, creepy, we hinder the person’s integration back into society. I have written many times on my blog about how the doctors in our case used language and body gestures that escalated my worry about my son, which I, of course, projected right back onto him. I can only imagine how Chris must have felt getting a double dose of worry.

Actually, I know how Chris felt. The more my husband and I projected worry and concern, the more nervous and isolated he got. His last relapse taught us a huge lesson in this regard. We decided to leave him largely to himself, safe to do and think what he wanted to in the comfort of our home, free to speak or not to speak, free to fail a course, free of our daily cheerful inquiries about his state of mind. Positive concern is still concern, so we backed off talking glowingly about his future prospects. We say very little. Chris is thriving under this approach. He still has a way to go in his rebuilding project, but he’s getting there.

The medical profession and its friend Pharma, has made schizophrenia a very high expressed emotion condition. They tell us it is the “most serious mental illness.” I didn’t know any better at the time and I took them at their word. Being “the most serious mental illness” implies that medical professionals, the people in white coats, are the best people to handle psychosis. The medical professionals, of course, administer drugs, which immediately ups the ante and makes schizophrenia a “very, very serious mental illness.”

Everybody agrees that mental health care needs a huge overhaul. I can’t think of a better way to express the basis for any treatment philosophy and practice than repeat the quote from the top of this page.

“The more people became shocked and worried about him, the more withdrawn he got.”

You can also interpret the quote as one of scale, meaning “the more people” who Loughner shocked and worried, the worse it got for him. For me, this is a clear call to de-escalate a mental health crisis as soon as possible by creating an environment of optimism within a small circle of caring. I have heard that the Open Dialogue Program in Finland does this well. Any large scale attempt to do the same generally falls victim to over-professionalization, almost by definition engendering a climate of fear and worry.