There is no shortage of glitzy events by the Napa Valley’s wine elite, but the annual music festival sponsored by Garen and Shari Staglin may be the most poignant.

When money meets schizophrenia (e.g. the Stanley Medical Research Institute), the condition becomes sad and chronic. Here is a supposedly feel good story about winery owners and their son. It doesn’t buck me, up, however. Where is the good news here about the person? The good news is in the glitz and the charitable do-gooderism. Why is the word “poignant” used in this article in reference to schizophrenia? It needlessly provokes, since so many others have recovered and moved on in their lives. The public is continously fed these kind of stories in relation to schizophrenia, much more so than with depression and bipolar.

Money can’t solve everything, it just confuses the issue when it comes to schizophrenia. Entrepreneurs are a class of individuals who feel that they can apply the same gung ho logic to human emotions, as if the human mind were a business plan or a balance sheet. The article is full of references to genetics, medications, and, unfortunately, resignation. Heaven help us if the Gates Foundation got involved with schizophrenia.

“Most people chose to bury or run away from the problem,” Garen Staglin said. “We chose to run toward it.”

Did you, really?

We’ve all heard the news that psychiatric patients die, on average, twenty-five years earlier than the average life expectancy. There appears to be no empirical evidence as to why this is so. Most of us know the answer is tied up with the alarming insistence by the medical profession on medications to treat these conditions. In addition to causing diabetes, blood disorders and heart conditions, there can be fatal drug interactions. The statistic presumably include the rare person who kills himself, and the rarer person who starves to death.

I believe that people who end up with a diagnosis of schizophrenia are physically healthier than most people, so there is no reason related to just having a diagnosis of schizophrenia that should case premature death. Many are like Chris. My son has, to my recollection, never suffered from a cold, a fever, a cavity, or an ear infection. He has never spent a day in bed due to an illness. . . until he ended up with a diagnosis and went on medications. Dr. Abram Hoffer observed that his schizophrenia patients tended to be the super healthy.

Since being on the medications, Chris has suffered dizziness, weight gain, tiredness. He has had to have his heart regularly monitored. While he was on clozapine he had to go for a monthly blood test. Despite all this, he has still has never had a cold, a fever, a cavity or an earache.

If you are naturally super-healthy (you have received a diagnosis of schizophrenia), there is absolutely no way that you should be dying twenty-five years early. If anything, you should be living twenty-five years longer than the average life expectancy. If people with a diagnosis of schizophrenia are supposedly dying twenty-five years early, it must be the medications that are causing this in the majority of cases. Getting off or substantially reducing the medications, even if you have been on them for years, should be something worth thinking about.

The excerpt below* is from a recent address given by Dr. Margaret Chan, Director-General of the World Health Organization, at the Mental Health Gap Action Programme Forum.

If you read the mhGap Action Programme guide, mental health care is seen as the domain of the medical profession. Antipsychotic medications are also the first line of treatment for psychosis and for bipolar disorder. This runs contrary to what consumers want. People who actually suffer from these and other mental health conditions often say that the person who made the difference in their recovery was a caring relative, a friend, or more rarely, someone in a clinical setting who actually took the time to talk to them in a caring, empathetic way. This kind of intervention early on has greate potential to help the patient recover quicker.

Running contrary to the consumer’s position, the mhGap Action Programme places the emphasis firmly on interventions that can be undertaken by busy doctors, nurses, and medical assistants. Well, how is a busy doctor or nurse going to fulfill the needed empathetic role in a crisis situation? They’re not. The guide directs the patient to» Encourage involvement in self-help and family support.

What positive, encouraging attitude does the guide promote about the prospects for full recovery?

» Inform the person of the expected duration of treatment, potential side-effects of the intervention, any alternative treatment options, the importance of adherence to the treatment plan, and of the likely prognosis. (Rossa’s comment: This is purely “clinicalese,” very off-putting to patients and family. Will non-drug approaches be considered as alternative treatments? The term “likely prognosis” sounds bad, very bad to me. It’s a self-fulfilling prophecy for a dismal prognosis. Also, how is a medical assistant, a nurse or a doctor qualified or even capable of predicting the “likely” prognosis?)

» Address the person’s questions and concerns about treatment, and communicate realistic hope for better functioning and recovery.
(Rossa’s comment: Again, who are the staff to tell us what is realistic? What’s this talk about “functioning?” We demand and expect better than this.)
 
Robert Whitaker, author of Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, should be invited to speak at the World Health Organization. He can talk about how the use of medications actually prolongues mental illness and, more importantly, in the context of the Mental Health Gap Action Programme, he can talk about the success of the Open Dialogue program in Finland. The Open Dialogue program is purposely staffed by non-medical professionals and resists drug treatment if at all possible.

*Excerpt:

With publication of the mhGAP Intervention guide, we now have a simple technical tool for detecting, diagnosing, and managing the most common, and burdensome, mental, neurological, and substance use disorders, in any resource setting.

The emphasis is firmly placed on interventions that can be undertaken by busy doctors, nurses, and medical assistants working, with limited resources, at first- and second-level facilities. Mental health problems, whether depression, epilepsy, dementia, or alcohol dependence, are real disorders. They cause death and disability. They cause suffering. They have symptoms. And they can be managed, in any resource setting.

This is the message we can now communicate with confidence.

No matter how weak the health system or how constrained the resources, something can always be done.

In a key achievement, the Intervention guide transforms a world of expertise and clinical experience, contributed by hundreds of experts, into less than 100 pages of clinical wisdom and succinct practical advice.
The guide, in effect, extends competence in diagnosis and management to the non-specialist, while respecting their busy schedules.

I’m stuck on the revision of the next chapter to my book to post at authonomy. I’m trying to write about why I believe that the experience of schizophrenia is particularly relevant to the Big Bang. There are a lot of dots to connect. The chapter attempts to link sub-atomic molecular vibrations, the Fibonnaci number sequence, the experience of sychronicity; a big task for an art history major. Will I have it all figured out and peer-reviewed by the time the next round of nominations for the Nobel Prize takes place?

While I pondered the meaning of the universe, Chris got up early and went to choir. There’s a guest preacher today from Haiti. I’m sitting this one out. I’m not prepared to sit through a two hour church service; I know what happens when there is a guest in the pulpit. The church service almost doubles in length! I’m becoming more of a Buddhist in outlook these days thanks to Chris. (Also a quantum physicist, hahah.)

Ian and I went, instead, to the flea market. I said Ian can come with me if he doesn’t buy the first thing he sees and announce that we’re done.  Men don’t shop like women. They think the point is to go, find what you want immediately, pay the full price and go home. Mission accomplished.

Chris sang in a benefit concert for Haiti last night. He’s looking good these days; got himself a second hand suit for the concert and fussed over the tie he would wear. He’s trying hard to be more of a personality around people. We’ve talked about “the zone.” I explained to him that, rather than zoning out and standing apart from people, which makes all of us uncomfortable, he’s got to enter their zone. He can stick his hand out or poke his face near someone else’s to introduce himself.

He’s entitled to invade their space and he has to start by noticing people not in his own zone, I tell him. Chris is taking this all very good-naturedly. For his entire life he has shown up without being noticed, like a ghost. You just turn around and there he is. Not a sound is made. Over the past few days, when he arrives home, he has taken to announcing himself in a booming voice (for him) “Hi, it’s Chris.” He is actively working on “the zone.”

My manuscript is now available on authonomy at this location.

Go to the side panel on the right and click on “Read the book.” The book will be displayed chapter by chapter. There is a table of contents at the beginning that gives you a better idea of what is happening in each chapter. It’s okay if you just want to pick off the chapters that appeal to you.  You cannot download the book. It must be read on-line.

You are entering a construction zone because the book is not fully uploaded and I make daily changes to it. It still needs editing and a major revision of at least one chapter toward the end. My editor has told me this; I just haven’t had time to do it. I have changed my thinking in some instances and when I go back to rewrite, I will phrase certain things differently.

If you would like to tell your friends about my book, here’s how I would pitch it to pique their interest:

1) I’m a mother writing about her son’s diagnosis of schizophrenia. There are very few mothers (I can think of one only) who have published a book about this sensitive subject.

2) I’m a parent who objects to the current biochemically-driven model of schizophrenia and other so-called mental illnesses. This pits me against the majority of family members and the public-at-large who have gone along with the idea of mental illness as a brain disease. The time is ripe for challenging this view, especially when this criticism is coming from a parent.

3) This book discusses a lot of unusual holistic therapies and helpful attitudes that the family members can adopt that should be better known to the general public. I describe the therapies and the improvements that I saw in Chris that I attribute to the therapies undertaken.

I’d be delighted if you read the book and I welcome your feedback. You don’t even have to tell me that you’ve read it or even bother to read it. I don’t keep a list. If you’d like to comment or push the book to the attention of the greater authonomy community, you’ll have to register. It’s quick and you don’t have to be a writer yourself, but it helps if you like to read and comment on others’ manuscripts. My goal is to generate more support for the position that you and I share about so-called mental illness. Invariably that means a published book.

authonomy says:
Attracting external readership can really boost your visibility on the site. So if you already have champions from outside the authonomy community – whether that’s family, friends, colleagues or visitors to your blog, facebook profile or other website, you might also encourage them to join the site and get involved. If they can prove their credentials to the community by building their talent spotter rank, then they’ll be in a position to be noticed and in turn help you raise the profile of your book.

Please forward, tweet or retweet this post to your friends to let them know that there is a growing number of parents who are refusing to go along with the biochemically driven model of mental illness.

If you have problems viewing the book, please let me know.