Rossa Forbes

One reader’s comment to the NY Times Patient Voices

If you see meaningful coincidences everywhere, you get quickly labelled schizophrenic and called “delusional.” You are urged to take drugs and told that if you don’t accept your illness, this also proves you are delusional. The New York Times article that I referred to in yesterday’s post received a lot of interesting comments, many of which urged a different way of looking at schizophrenia. A few readers clung to the idea that their relative was delusional partly because they wouldn’t accept their illness.

Here’s a comment from a reader that fits in with my previous posts on Pythagorus, numerology and seeing patterns. Now, if it were recognized that the experience of schizophrenia is actually an experience of trying to make sense of the environment and is therefore a healing experience, more people, properly supported, actually would heal.

The skeptics use the term “apophenia” to denote delusions of the mind. It includes seeing patterns in nature, which to them, are just coincidences.
Nonsense, I say:
I’ve obtained an emphatic verification from a senior research group at Princeton University, which finally proves that an aspect of “mind” does transcend space and time, i.e., precognition.

This is their letter:

PRINCETON UNIVERSITY
SCHOOL OF APPLIED SCIENCE
C-131 ENGINEERING QUADRANGLE
P.O.BOX CN5263
PRINCETON, NEW JERSEY 08544-5263

FEBRUARY 8, 1993

Dear Mr. Laurence:
Thank you for sharing the description of your “meaningful coincidence” with us.
It is an EXCELLENT example of connectedness between the subjective and objective domains of human experience, mediated by the symbolic language of numbers. In a very real sense, as was recognized by Pythagoras and his successors, this symbolism lies at the root of all science, including even the contemporary, whereby the human mind seeks to interpret in some tangible and communicative mode the intuitive insights gained from observing nature. The error lies in our FORGETFULNESS of the origin of these symbols.

Sincerely,

*Brenda J. Dunne
Laboratory Manager

Rossa’s comment: The skeptic in me says that if the letter author had written to Brenda J. Dunne and stated that he was suffering from schizophrenia, she would have dismissed him as a crank, despite the fact that the experience of synchronicity is even more profound in the so-called schizophrenic.

Why NY Times Patient Voices series reads like an infomercial

I joined NAMI yesterday for “the research.” Here’s what was in my in-box from NAMI this morning: The New York Times (NYT) Patient Voices series offers intimate glimpses into the lives of NAMI members living with schizophrenia or schizoaffective disorder.

This is not just a random NY Times story. It is by and about NAMI members, and, judging from the e-mail below, not just any NAMI members, but NAMI-trained speakers who spread the gospel according to NAMI. Right above this NY Times series is an advertising banner that proudly states “Ask the doctor if NEW 23 mg/day Aricept is for your loved one.” NAMI has been heavily criticized, by Senator Chuck Grassley for one, for receiving most of its funding from pharmaceutical companies. If you are familiar with the NAMIWalks program, clicking on the map for just about any state quickly reveals that pharma is a large contributor to this cause.

NAMI turned me off very quickly when I first started to look for help for my son. I felt that if I listened to what they say, my son would be a patient for life, in large part because it emphasized the need for medications every step of the way. It had a dreary view of mental illness that I didn’t want to buy into, not just for my “loved one” but for the sake of my own mental health. A lot of my complaints have to do with the fact that NAMI speaks words of sadness and impact, of stigma and of lives less lived. Schizophrenia to NAMI is something to be managed and endured through a thin veil of pervasive sadness. Yes, sad is how it appears to me.

Through compelling vignettes and an interactive website, visitors learn how these illnesses can impact every facet of a person’s life, from relationships and stigma to work and faith. Listen to their stories and then join the conversation on the NYT’s Well blog.

NAMI’s In Our Own Voice program (IOOV) brings these kinds of personal stories to life. IOOV is a national, public education program in which trained speakers share their stories of mental health recovery with students, law enforcement officials, educators, health care providers, faith community members and other audiences.*

Personal stories are uniquely powerful. They illustrate how one can manage his or her illness and live a full, rewarding life. They put a face to mental illness and remind us that mental illness affects all of our communities. They show us that recovery is possible and encourage others traveling along their own paths to wellness.

Speakers not only educate others, but also find great fulfillment in sharing their experiences. NAMI members have many inspiring stories to share through IOOV, NAMI.org and our many publications. If you have a story you’d like to share, please e-mail yourstory@nami.org.

With your help, we can continue to educate communities across the country about mental illness one story at a time.

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*NAMI’s In Our Own Voice program was started with a grant from Eli Lilly and Company.

Rupert Sheldrake on habits and expectations

Does anyone out there not know who Rupert Sheldrake is? Rupert Sheldrake is an English biologist who has made a phenomenal reputation for himself in a field that he calls “morphic resonance.” Seven years after completing a PhD in plant physiology at Cambridge he took a position in a plant research lab in Hyderabad, India. Three years later he joined an ashram run by Dom Bede Griffiths. Sheldrake gradually reached the conclusion that nature was ruled by habits, not by eternal, unchanging laws as envisaged since dawn of Modern era by scientific tradition. The idea of eternal laws may have been appropriate to the era in which modern science was born, when more or less absolute monarchs ruled many nation states. From his Eastern experience, Sheldrake changed his linear biology orientation and embraced the idea that the universe was intelligent, intuitive, non-random and spiritual. Morphic resonance recognizes that the universe is living and growing and that memory is inherent in all living things.

The idea of laws as no more than intellectual habits now offers a whole new foundation for scientific endeavor. Knowledge used to be confined to monasteries and was the domain of the Catholic Church. Our western canon of scientific thought was rarely seeded by thoughts from different cultures even through most of the past century. Our scientific “open-mindedness” until very recently has been the domain of DWEMs (dead white European males). This unchanging view of laws governing nature is being blown wide open by quantum physics, consciousness research and the invasion of other cultures on our established habits.

Therefore, is the scientifically “valid” idea that there is a disease called schizophrenia along with other mental illnesses no more than a long entrenched habit of thought, like the idea that the sun revolved around the Earth? I would say, yes, yes, yes. Change your belief system (your expectations) and you change the outcome. If you believe in the disease, you are the disease, and people will treat your accordingly.

Here is an excerpt from Rupert Sheldrake on “expectations.”

Lurking in the background is the alarming thought that much of established science may reflect the influence of the experimenters’ expectations, even through psychokinetic or other paranormal influences. These expectations may not only include those of individual investigators, but also the consensus among their peers. Scientific paradigms, models of reality shared by professionals, have a great influence on the general pattern of expectation and could influence the outcome of countless experiments.

It is sometimes suggested, in a joking way, that nuclear physicists do not so much discover new subatomic particles as invent them. To start with, the particles are predicted on theoretical grounds. If enough professionals believe they are likely to be found, costly accelerators and colliders are built to look for them. Then, sure enough, the expected particles are detected, as traces in bubble chambers or on photographic films. The more often they are detected, the easier they become to find again. A new consensus is established: they exist. The success of this investment of hundreds of millions of dollars then justifies yet further expense on even bigger atom smashers to find yet more predicted particles, and so on. The only limit seems to be set not by nature herself, but by the willingness of the US Congress to go on spending billions of dollars on this pursuit.

Why I feel psychiatry is an abuse

Psychiatry, which actually does know better, tells everybody’s story but the patient’s. Psychiatry, largely rejecting R.D. Laing, Thomas Szasz, Soteria, and patient inspired approaches, finds itself in thrall to the drug rep’s story, the thrilling story of Novartis, AstraZeneca and Bristol-Meyers-Squib. The pharmaceutical companies tell the story of guys under the bridge, who miraculously “start talking sense” after a course of their drugs. What happens to these guys under the bridge? Well, supposedly they are not cured, because drug companies and doctors don’t believe in cure, only management. Perhaps they are now living out their lives in half way houses or are back under the bridge. We’ll never know, will we? Psychiatry seems to keep poor records of what happens to its patients in the long run. If they did, we might be hearing a different story, the story Robert Whitaker tells in Anatomy of an Epidemic.

Psychiatry and drug companies don’t allow families to tell their stories. Families ask for help, and despite the fact that psychiatry does know better, we are told that there is no cure, that we are not to blame, that the patient has a damaged brain. Just trust in us, they tell us, and we will manage the problem. But, they don’t, do they? Usually, the problem gets worse.

Psychiatry knows better, but it lost the plot years ago. Remember Mark Vonnegut, the son of Kurt Vonnegut who wrote a really good story about his psychotic break (The Eden Express). In the book, Vonnegut credits a lot of his initial recovery to the vitamins that he took.* Fast forward a few editions of the book and he expresses regret that he ever said that. I was really puzzled about why he turned his back on vitamin support and his healthy skeptcism of the medical profession, until I realized that in the intervening time, he had gone to medical school, where he no doubt learned that vitamins couldn’t possibly be responsible for his recovery. He became one of “them.” I always thought that Mark Vonnegut had a psychotic break or two and then recovered. Apparently, this is not the case. He actually suffers from what appears to be tardive dyskinesia from the drugs that he subsequently opted for in favor of the medical paradigm.**

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*From schizophrenia.org In his book, The Eden Express, Mark Vonnegut, the son of novelist Kurt Vonnegut described his experience with schizophrenic delusions. Standard psychotherapy was unable to help him, and most of his doctors said his case was hopeless. Then Vonnegut went to the Brain Bio Center and “the biochemists said otherwise. They fixed me up with embarrassingly inexpensive, simple, nonprescription pills. Vitamins mostly.”

**This information was gleaned from an address that Mark Vonnegut gave in 2003 at a NAMI convention. Unfortunately, it is no longer available at this link. In his speech he refers to the side effects of the drugs he takes.

What, me worry?

I woke up in the early hours of the morning and couldn’t get back to sleep. So, I lay there and wondered what was that low flying plane doing at night over our peaceful city? That thought entertained me for a short while, and then Ian woke up and padded into the bathroom and back to bed. Instead of playing possum like I normally do so I can get some decent sleep, we talked. And what did we talk about? Chris? No. Taylor or Alex? No. We talked about Ian having his mercury fillings extracted and I warned him that doing it quickly can lead to psychological trauma and he could go insane! We laughed. Insanity has no hold on us any longer. I know of someone who claimed that her daughter having all her fillings replaced at once led to years of pychosis. I also know someone who claimed that having them all removed quickly cleared up his physical and mental health. Go figure.

I am so grateful that waking up in the middle of the night these days does not lead to constant worry like it used to. Ian and I have passed our one year anniversary of not discussing Chris with each other. We made this pact when Chris left the psych hospital after his relapse. In the past, Chris’s peculiarities and our dealing with the doctors drove us mad with worry and we would confide our worries to each other. This invariably led to strife because we each had a different idea about how to handle this. We no longer seem very interested in what Chris is doing. We have taken the long term view, that if we just leave him alone and provide whatever professional support we can, then he will get better. He certainly seems like he’s getting better, but we are no longer there to take his pulse.

This is our own version of practicing low expressed emotion. It means not discussing Chris. This strategy has miraculously allowed us to stop worrying. We trust that all will be well.

The wounded warrior

This post is a tribute to Gianna Kali, the creator of Beyond Meds, a blog about withdrawal from medications, but not just a blog about withdrawal. Gianna has chosen to continue her healing journey without the tiring demands of daily blogging. Gianna Kali is her pseudonym. Perhaps she took inspiration from the Hindu goddess Kali, the dark goddess, whose name is associated with time and change.

Like most goddesses, Kali is controversial. Her goddess persona changes with the time. She has an original terrible side associated with death and destruction, but also a later repositioning as a warm and kind maternal Mother of the Universe. Like a mother, she is a protectress of last resort. Indian mythology is complex and has evolved over thousands of years. Since I am not an Indian scholar, I will leave interpretation to others, such as this writer:

Of all the forms of Devi, She is the most compassionate because She provides moksha or liberation to Her children. She is the counterpart of Shiva the destroyer. They are the destroyers of unreality. Of all the forms of Devi, She is the most compassionate because She provides moksha person who is attached to his or her ego will not be receptive to Mother Kali and she will appear in a fearsome form. A mature soul who engages in spiritual practice to remove the illusion of the ego sees Mother Kali as very sweet, affectionate, and overflowing with incomprehensible love for Her children.

Gianna Kali is generous of spirit. She chronicles her healing journey to help others and she has helped neophyte bloggers like me spread our message through her blog. Spiritual to begin with, she eventually found herself on the painful path she was destined to take.

In the book, Goddess Shift: Women Leading for a Change, Dr. Susan Kolb writes about her own healing journey in terms of the mythology of the wounded warrior. In order to heal others, a person has to undergo a revolutionary healing journey of her own. This is a sacred journey, also documented as the path of the alchemist. The warrior emerges stronger, wiser, better able to carry on and an inspiration to others. Through ordeal, the warrior comes to know herself.

Thank you Gianna and all good wishes for your continuing recovery. We look forward to hearing from you when you are ready.

Shapes and angles

I was rummaging through my purse cleaning out debris from my recent vacation and I came across an article that I had torn from USA Today, Transitioning to college with a learning disability. According to the article the number of programs offered to students with learning disabilities at the nation’s colleges have skyrocketed since 2001 from 22 to more than 250. I get interested when I read these things in a “follow the money” curiousity. With programs come employment opportunities. Through grant money, the Department of Education encourages post-secondary institutions to establish transition programs for students with learning disabilities who want to go to college. According to the article, the number is “only going to increase”

Fair enough, I suppose for people with certain well documented learning disabilities like dyslexia, but then we come to a learning disability cited in the article that has to do with an “inability to recognize shapes and angles.” The girl cited in the article has been receiving help for this since grade 3. My thinking is that maybe she should not major in math or design. When my sons were at school, so many children had very specific learning disabilities that sounded similar to the shapes and angles one, or else they involved “auditory processing deficits” or not being able to find the right word to use. They received extra time on tests. Is this proliferation of really specific learning disabilities that most people will eventually manage to compensate for, really all that necessary? I guess so, since there’s a huge help industry out there that is “only going to increase.”

Mere alcohol doesn’t thrill me at all

Chris is quite perky these days. There are very few times in his life where I have seen him thrilled, but Sunday was one of them. His friend from high school who used to be in a band with him, phoned him out of the blue and asked if he would join his new classic rock band. No hesitation in saying “yes.”

The other times in his life where I would say he was thrilled are the following: Getting his first guitar, getting a laptop, our buying a la-z-boy recliner for our living room (all the men in the house were thrilled!) and being in a band.

He knows he has bigger things to think about, like a career direction, and he is working on these, slowly, while getting lots of support from others. For now, he is thrilled and it sure suits him.

Early separation trauma

The hardest thing for me about Dr. Clancy Mackenzie’s theory of early separation trauma for schizophrenia is in reviewing the way we lived our life when Chris was a baby. According to Dr. Mackenzie, he can tell from the way the person expresses pychosis, the age at which the separation trauma occurred. He links it invariably to separation from the mother, not the “mothering one.”

Here’s what Chris’s early life was like from a separation point of view. When Chris was four months of age, I went back to work and we employed a woman to come into our apartment and take care of him while Ian and I were at work. We felt this arrangement was preferable to day care for us. After less than a year, “Gloria” was no longer able to continue and we employed her mother. When Chris was two and half years old, Alex was born and we moved to a house in the suburbs. We felt that Gloria’s mother was too old to make the commute every day and we found a young live-in nanny. We employed a succession of live-in nannies until our youngest, Taylor, was in kindergarten.

Dr. Mackenzie would have a field day with the situation and the many caregivers. We honestly felt that keeping Chris at home and not taking him out to daycare was the least disruptive option.

Dr. Mackenzie claims that he can pinpoint from observing someone by their behaviour, reality and feelings the age at which the trauma occurred. He relates how a woman came into his office and said she had schizophrenia for the past twelve years, and he said “no you don’t. You have schizoaffective disorder.” He believes that schizophrenia has its origins in the first eighteen months of life and he told her that her trauma happened at 20 months. (Her younger brother was born when she was 20 months old.) This was obvious to him because he felt she had too much warmth and affect for a person traumatized before twenty months. (While Dr. Mackenzie’s schizoaffective/schizophrenia distinction is disturbing to people like me who don’t care for labelling, I think I get where he is coming from.)

Dr. Mackenzie’s trauma theory is compelling because he claims that the trauma is specifically within the first eighteen months and that it is separation anxiety. A quick reading of his website shows that he believes that the best expressed emotion is not low expressed emotion but zero expressed emotion, which means that the traumatized person has to break off all ties with the family while healing takes place. This sounds promising in that it has worked for other people, but how is this achieved in practice? We tried to encourage Chris to leave (for his own good!) two years ago and we got relapse in return. Where does someone go when they have no money or job skills?

Dr. Mackenzie may not have it all right, but he has made a good enough case to investigate further, which I will do when I am brave enough to follow up. Kris at Borderline Families is also getting the ball rolling on her blog post.

The child’s world is small

A recent comment from Anonymous sent me scurrying to Bruce E. Levine’s Huffington Post article Thinking Critically About Scientology, Psychiatry and their Feud.

Interesting article, but what really got me thinking was the author’s commonly enough held opinion that mental illness is a rational response to an insane world, which I am now re-examining. (The schizophrenia diagnosis has made me get around eventually to re-examining everything. It’s been a blessing.)

It was R.D. Laing, who made the original insane world observation and people like me have been making this argument ever since. Except that I am more of the opinion now that mental illness is the direct result of not the larger world (society) that most people have in mind, but the smaller world – the child’s world – the familiar environment, the family, not some abstract thing called “society.” People don’t go insane because there is air pollution or poverty in the world. Their suppressed sense of self has made them sensitive to these problems, yes, but people are more likely to go insane because the family environment is polluted with lies or has a poverty of emotional warmth or a tsumani of physical or verbal abuse. People do not go insane because someone else’s family tree is warped (who cares?), but they do inherit the emotional resonance that their own family tree passes down.

It is much less troubling, I suppose, for parents and patient alike to accept the idea of an insane world, rather than to accept the idea of insane family dynamics. The insane world view has much in common then with the diseased brain view of mental illness. Both deflect the situation in ways that don’t point the finger at any one individual, thus making the situation palatable and guilt-free.

I said to a friend one time when my children were very young and they were all at their most challenging/difficult/wimpy (take your pick), “I like my own children but other people’s children I can do without.” She heartily agreed that the same applied to her. The brewing period for mental illness is the period of childhood where the family is being formed, imperfectly. Families understand each other on some level, but do not understand the way other families relate with each other.

Society is insane, but “mental illness” begins and ends at home. The “mental illness” usually manifests when the older child leaves his small world and steps out into the threatening larger one. Rather than the individual directly confronting past hurts, psychosis feels like a “safe” way to express accusations, that if expressed honestly and directly, would trouble other family members.