Not so Far From the Tree, but relatives greatly in need of help

Please note that Far From the Tree was published in 2012, so the interviews below are recent. The level of ignorance is astonishing. Harvard psychiatrists tapering their patients by 30% every week, people not being aware that clozapine requires liver testing, many families not knowing that if you treat someone with respect and empathy and encourage daily contact, they will blossom.

MacLean pychiatrist: "Then we come up with a plan to taper their medication by about thirty percent every week."

William's sister: My father found a small house for him in the woods, away from the summer community, so no one would see him. In fact, my father saw him only three times in thirty years." Sister finally intervenes when her brother is aged 52. "That kind of denial, the way my father was--ate him alive, and now he's just a hollow wreck. A whole life slipped away, that didn't have to"

Malcolm's brother: Just after Malcolm died: "No one expected Malcolm to die when he did. Peter said, "of course the illness reduces your life expectancy, and the medication, even though it's helping you, reduces your life expectancy, too. But, at least he got himself to the best place he could. We'll take this death because of the quality of life he had."
After the coroner's report on Malcolm: The coroner's office took blood samples, just to rule out the possibility of wrong doing. A few months later, the family learned that clozapine ended the same life it had redeemed. "We didn't realize death by clozapine was even possible, but are gradually learning more about it," Peter wrote to me. "It seems like the toxic levels of clozapine built up over time because his liver was not processing it. Some have suggested to us that liver function should be tested regularly to make sure there is not a buildup in toxicity, and that this is a matter of standard medical practice.....Now we are left with the final tragedy--the medications we forced him to take, which he railed against and fought with all his spirit for most of his life, killed him."

Paul and Freda, who now have two sons, live in terror of seeing them develop schizophrenia. they considered using a sperm donor, but couldn't bring themselves to do so. ...In 2008, Paul and Freda agreed to participate in a survey on schizophrenia genetics. "We sit by the phone, Freda siad, "waiting to find out what the gene is, so we can test the kids."

Harry's mother: (Why didn't the author let Harry speak for himself?  Harry's mother's testimony is hearsay)
"He presents as much better than he is, so even since his diagnosis, his therapists have picked up much less than they should have. He still thinks that if he acts like he's normal he'll be treated more normally by the world. All it means is that he doesn't get as much help as he needs."

Not so Far From the Tree

I've just started reading Far From the Tree, by Andrew Solomon. My friend, Lisa, who will be a first time grandmother in the next few weeks, handed it over to me because it wasn't the kind of bedtime story a soon-to-be grandmother should be reading. Solomon's book is about parents coming to grips with their child's deafness, dwarfism, gayness, schizophrenia, etc.  Lisa said every chapter seemed to have an interview with a mother who said, "all seemed fine . . . until the baby was born."

Does the apple fall far from the tree?  I don't believe it does. Perhaps it's my experience in Family Constellation Therapy that tells me that family inheritance is social and subtle, not all genetic. Andrew Solomon is gay, and in the forward to the book, he says something that is quite astonishing to me. He writes that most parents of gays are straight, and sexual identity gets picked up in the exterior environment with which the child comes into contact. Wait, wait! Sexuality, like other character traits, is on a spectrum. Not all men and women are robust representatives of their sexual assignment. Many people who have what we might think of as latent homosexual tendencies, get married and have children.  Sex may not be a big part of the relationship, other than feeling a societal duty to procreate. The child, will, however, observe, and draw a sexual identity

So, it's telling that the author would portray schizophrenia as a brain disease,and pooh pooh the environmental influence almost altogether. He has been indoctrinated in the E. Fuller Torrey approach that is so discredited by activists in the psychiatric rights community.  Who did he interview for the schizophrenia chapter? The misery crowd. Mainly elderly parents of middle aged children who appear not to have made any attempt to understand their children in the context of a greater truths. The book description poses the question: "All parenting turns on a crucial question: to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves." By and large, the parents and families is the schizophrenia chapter appear to have neither accepted nor encouraged.

Had these parents shown more empathy and understanding, perhaps these stories would be different. Many tossed out their children to the streets, or group homes. Some chose not to speak to their child for years. (This sounds like how homosexuals were treated in years past, and in many cultures today.) They term their own progeny "crazy" and describe all the awful things their child has done to them. Today, would a parent be so derogatory towards a gay son or daughter? No, in western cultures, at least, there has been a revolution in thought, understanding and acceptance of a deviation from the norm.

Shouldn't Andrew Solomon, given his identification with being a gay person, have realized the irony of the schizophrenia chapter? His portrayal of schizophrenia as dismal and chronic, just reinforces how strongly lobby groups like the Treatment Advocacy Center and NAMI have influenced the public understanding of mental illness. The misery crowd has blocked the public's ability to see the common ground between gay rights activists and mental health activists. People with mental health issues, marginalized as crazy by TAC like groups, will not be effective advocates for themselves.

I'm looking forward to rereading the schizophrenia chapter and doing further posts on this subject. The author has some interesting observations that I would like to tease out.

How to help someone recover

The best advice I've come across about how to help someone recover from a mental illness is from Pat Deegan, Director of Training and Education at The National Empowerment Center. The entire article is available for a nominal fee from the National Empowerment Center. If you know someone who is experiencing a mental health crisis, you can become their powerful ally by absorbing the message in Recovery as a Journey of the Heart. Her article explains how people like herself who have been labelled mentally ill defend themselves againt profound disappointment and hurt.

"The fact that I was unmotivated was seen as a problem by the people who worked with me. But for me, giving up was not a problem, it was a solution. It was a solution because it protected me from wanting anything. If I didn't want anything, then it couldn't be taken away. If I didn't try, then I wouldn't have to undergo another failure. If I didn't care, then nothing could hurt me again."

Think about how Pat Deegan's observations might apply to your own relative.

Turning points

The Families Healing Together course that I am currently enrolled in, talks about turning points for you and your relative.

I think our family is going through one right now. Chris is never home - too busy with his girlfriend. He is also increasingly able to make choices, to voice his opinions. He is voting with his feet. Hooray!

Lindsay Lohan, detox, and Adderall

Stories like the one below suggest to the public that (a) getting off prescription drugs doesn't take long and (b) Adderall is a weight loss drug.

Editor's note: Perhaps drug companies have a devious sense of humor. The word "addle," which is embedded in Adderall, means "to make someone feel confused and unable to think clearly."
(Cambridge Dictionary Online)

From The Daily Mail

And Lindsay Lohan is to be allowed to continue to take the prescription drug during her spell in rehab - at least for now.

On her entry to the Betty Ford Clinic in Indio, California, Lohan was required to undergo a 48-hour drug detox, which she has just successfully completed.

A source told website TMZ: 'Doctors are currently evaluating Lindsay's diagnosis and the efficacy of the drug. If doctors disbelieve her diagnosis or the usefulness of Adderall, they will cut her off.'

Lohan has taken the drug for years and believes she cannot function without it.

Her choice of rehab for her 90-day court-ordered stay was said to depend on finding one that would allow her both to continue taking the drug, and to smoke.

In an interview with the Daily Mail just last week she explained: 'I have severe ADD. I can’t stand still.

'So I take Adderall for that, it calms me.'

Lohan admitted that she knew the drug could be abused by those keen to experience its side effects.

Read more: http://www.dailymail.co.uk/tvshowbiz/article-2320905/Lindsay-Lohan-completes-48-hour-drug-detox-settles-rehab--shes-allowed-Adderall.html#ixzz2SsQa2ysB


 

The final few frontiers

Chris has come a long, long way, in many areas of growth, except for one very fundamental one. His sense of self is lagging. Always has. As a baby, toddler, and adolescent, he would be what he thought anyone wanted him to be. He expressed no preferences of his own, just took the preferences of others. I sensed his not wanting to confront or struggle while he was in the womb. (A possible clue: He was born twenty seven days overdue!) In high school, it kind of went undercover. He had friends, activities, school work to focus on. Then, boom, going away to university caused his non-existent sense of self to come tumbling down. My regret is that I should have recognized this a problem that he wouldn't grow out of without some help, rather than thinking that he would eventually find himself. It's a huge challenge for him now.

Today is Ascension Day, a holiday in many European countries. Chris knocked on our bedroom door around 9 a.m. to announce that he was going to his piano lesson. "On a holiday?" I asked. Apparently.  Less than an hour later I heard the key in the front door and Chris was back. Why was I not surprised? "The trains are only running on the hour, instead of every half hour, " said Chris. "So, why didn't you call me and I would have come and picked you up and driven you there?" said I, knowing full well that Chris never asks for anything that he thinks might cause others even slight inconvenience, which is why he never asks. He used to be endlessly apologetic; if you stepped on his toes, he'd figure it was his fault, but thankfully, less so these days. On the one hand, this particular character trait often reveals a kind heart and generous spirit. The dark side of this trait is not setting your own boundaries.

I got exasperated. "Chris, why do you deliberately sabotage these things? You must have known that the holiday train and bus schedule is always slower, and yet you went through the motions of going to your piano lesson, something you profess to enjoy, seemingly ignoring the fact that you need to plan ahead for the changed schedule. Why are you doing this to yourself?"

Tangled in with all of this is Chris's huge fear of failure and a perverse perfectionism, so an unwillingness to try too hard.

Chris and I sat down and we went over the pattern of behavior. Chris feels bad, knows it's a problem, but can't for the life of him figure out what to do about it. (Eight years of psychiatry and we're only beginning to crack this one.) "Do you read self-help books?" I asked. "Yes," he answered.

"Chris, you can begin by small things. (I've been giving him this advice for years now, but it hasn't sunk in.) Start asking people for help. Reach out. You'll get mainly yes's, but you'll also get no's, so deal with it. And, when your father sees you and asks you how your piano lesson went, what are you going to say?"

"Great?" ventured Chris.

 "You're learning, Chris."

Chris has a pathological inability to lie. Telling the truth is admirable and the best policy in most situations, but white lies can be useful protective devices from going into conversations you don't want to have.

Half an hour later Chris asked me if I would drive him later today to a rendez-vous outside of town.

"With pleasure."

"Oh, I should have said please," said Chris.

"Why don't you temporarily abandon 'please' while you build up a better sense of self? I said."Look at your brother." I pointed to Alex, who had just groggily emerged from his room."Huge sense of self, doesn't do anything that doesn't suit him. He can be a pain in the ass, but he at least he gets what he wants."

We both laughed.

Eve Ensler on what made her sick

Eve Ensler is the brilliant author, playwright, feminist (the list goes on) who is best known for The Vagina Monologues, which she wrote and performed along with countless other well-known women. She is currently on a book tour to promote her memoir, In the Body of the World.  Eve is an incest survivor whose writing focuses on the female body, violence and sex, so it is ironic that much of her recent history is taken up with her struggle with uterine cancer.

from The Globe and Mail
"She has a theory about what may have made her sick: The sexual abuse she suffered as a child, as well as the countless stories of horror she has heard over the years, may have contributed. So she has made a decision: She’ll still listen to those stories as she signs books or meets people at fundraisers, but she is not seeking those stories out any more.

“I just can’t. I have to protect myself,” she says. “I feel like I spent 15 years absorbing the stories. And I’m committed. I signed up. I don’t need to be convinced any more.”

Wise woman. She listened to the messages her body was signalling. To survive, she stopped dwelling on things that make her sick. There's a message here for anyone. Eve Ensler also contributed a terrific chapter to Goddess Shift: Women Leading for a Change. (See the book elsewhere on this page.)

From Wiki
"This is a ravishing book of revelation and healing, lashing truths and deep emotion, courage and perseverance, compassion and generosity. Warm, funny, furious, and astute, as well as poetic, passionate, and heroic, Ensler harnesses all that she lost and learned to articulate a galvanizing vision of the essence of life: “The only salvation is kindness.”"
 

CAMH psychiatrist reviews Silver Linings Playbook (unmoved by its lighter side)

A word of explanation. The Centre for Addiction and Mental Health (CAMH) is the facility in Toronto where Chris began his ordeal as a psychiatric patient in 2003. The place where we began to lose all hope.

Here's why. TVO's Inside Agenda blog recently rounded up CAMH psychiatrist Dr. Stephen Sokolov to review the film Silver Linings Playbook. Sokolov is predictably a voice of doom and gloom when it comes to "mental illness." Abandon all hope, ye who enter CAMH! Family members, included.

Although Dr. Sokolov wasn't one of the psychiatrists who saw Chris, his attitude is typical of the ones who did. Doctors who, no doubt meant well, but who kept the discussion clinical, which is alienating for patients and families. Imagine dealing with Sokolov when your "loved one" has been admitted to CAMH for the first time. He'll dash any faint hopes you might be harboring. If you are lucky, perhaps you will find the reserves within you to reject the psychiatrist's self-serving view of mental illness as a "treatable" disease, but it'll probably take years to undo the damage.

From Sokolov's review:

"The next day, we see Solitano taking his medications. The markings on the pills are clearly visible on screen as lithium 150 mg and Seroquel™ 100 mg -- both, I must say, at subtherapeutic dose."

and


"This isn't the first time we've seen light treatment in film of a tragic subject (the obnoxious "Life is Beautiful" comes to mind)."

and

"In my opinion, the result is a trivialization of these serious conditions and the damage they inflict on people's families, careers and, for too many, their lives, especially for the not unsubstantial number who commit suicide. The implicit theme in "Silver Linings Playbook," true to the romantic comedy format, is: "Take your medicine, and you’ll get the girl." I can't help feel in part that this disingenuous and simplistic message dishonours many of those people who I've seen struggle with this terrible but treatable disease.

Last day to register for interactive family recovery course

I have registered for this course even though I feel that in many ways, our family is on top of our situation with our son, Chris. (I hope Chris feels the same way, too.) But, I can't presume that I know everything there is to know about recovery from major psychiatric conditions and that there is nothing left to learn. I had to cobble together my wisdom over many years without access to resources that offer a positive perspective of recovery.

If you or someone you know might be interested in learning about the family recovery perspective through a weekly online course, please encourage them to consider enrolling.

Recovering our Families
8 Weeks of Hope and Healing

Our fully facilitated, interactive online course supports individuals, families, and friends who are recovering from or working with mental health challenges, trauma or psychiatric diagnoses such as schizophrenia, major depression, bipolar, anxiety and other disorders.

May 8, 2013 - July 3, 2013
Register Now, Space is Limited

During our 8-week course, individuals, families and supporters will explore key recovery concepts including:

1. Sharing our experiences

2. Exploring recovery fundamentals

3. Understanding mental health

4. Harnessing the power of hope

5. Using a strengths-based approach

6. Building relationships amidst psychosis

7. Creating healthy boundaries

8. Celebrating recovery stories

Our classes are open to anyone working with emotional distress - individuals, families, friends and mental health care providers. Group discussions, exercises and reflections will be guided by our family recovery coach in a password protected, media-rich closed group website to encourage safe sharing and healing in a supportive community.

About Us
Families Healing Together provides interactive, online family mental health education designed to help families and individuals transform the experience of emotional distress, psychosis and other challenges that may have psychiatric diagnoses. Our strengths-based recovery approach helps families move from distress, fear and confusion to greater sense of well-being, wholeness and connection. Families Healing Together is a collaboration between Family Outreach and Response, PracticeRecovery.com and Mother Bear CAN, three organizations dedicated to helping families recover from mental health challenges through healing power of community.

Course Title: Recovering Our Families

Next Session: May 8th – July 3rd 2013

Duration: 8 weeks

Facilitator: Krista MacKinnon

Time commitment: As little or as much as you can invest. To receive benefits from the course, a minimum of one hour per week is be required.

Cost: $150 USD

Register Here: Paypal Registration

New paradigm novels

My  guest today is author Jilaine Tarisa, who kindly gave me her permission to reprint her reflections on what is meant by a new paradigm novel. Her new paradigm novel, A Moment of Time, is available as an e-book. I got to know Jilaine because we were both writing about revolutionary ideas and ways of understanding old themes; she approaching it in the form of a novel and I in the form of memoir.

What Is a New Paradigm Novel? (Part Two)

Part Two: What Is a Paradigm?

Many people would consider his opinions extreme, Kimo knew, so he mostly kept them to himself. He could afford to view unsustainable lifestyles and practices with disdain, for he had never benefited from the prevailing model; he had no vested interest.
(from Chapter 24, A Moment of Time)

In Part One, I noted some of the characteristics of the conceptual box that has become known as the novel. In Part Two, I describe some of the features of paradigms.

In 1962, historian of science Thomas S. Kuhn published The Structure of Scientific Revolutions (hereafter “SSR”), a controversial work that challenged cherished notions about the nature of scientific development. Kuhn proposed that science does not progress in a linear fashion, as many had supposed, but encounters revolutionary periods during which the paradigm that has governed scientific inquiry and methodology is replaced with a new and incommensurate paradigm. In other words, the new view is incompatible with the old view and cannot simply be incorporated into the existing model. The new paradigm may be superior to the old one because its theories provide better explanations for questions the old paradigm could not answer; using the new paradigm’s methodologies, scientists may be able to solve problems that adherents of the old paradigm were unable or unwilling to address. New discoveries or inventions can precipitate a paradigm shift, allowing approaches to emerge that previously were not possible or feasible. (Study of the behavior of minute particles awaited the availability of instruments that made observation possible, for example.)

Kuhn’s early training was in physics and his primary interest was in articulating his views about the beliefs and practices unique to the natural sciences. (Science is a self-governing community; scientists themselves decide upon the rules and review each other’s work. Though researchers must adhere to ethical standards imposed by the larger community in which they exist (and practitioners of professions like medicine must comply with licensing requirements), no external authority defines the scope of scientific activity or determines whether a theory is plausible.) Nonetheless, in developing his theses Kuhn turned to the social sciences as well as philosophy. (He reviewed studies about the nature of human perception, for example, and refers in his work to Gestalt and Wittgenstein.) As a result, many of Kuhn’s observations apply to human endeavors outside of the scientific tradition. Since the 1960s, use of the term paradigm has spread to psychology, theology, and economics and is popular beyond the world of academia.

In SSR, Kuhn used the term “paradigm” in two ways. The first use refers to “the entire constellation of beliefs, values, techniques, and so on shared by the members of a given community.” (1969 Postscript to the third edition) (The second use, paradigms as exemplary past achievements, is less relevant to the discussion that follows.)

Despite individual differences, members of a community accept the particular views that the model they follow prescribes. Beliefs and assumptions can be explicit or unexpressed, but the adherence to the model is what defines the community. Different schools of thought within a discipline or profession may use similar terminology, share basic assumptions, and even study the same kinds of phenomena, but they will interpret the data according to the model, or paradigm, that guides their inquiry and determines the value of the results obtained. Ideas that run contrary to expectations predicted by the model are dismissed—the continued existence of the paradigm requires the elimination of extraneous matters so that the matters that are explained by the paradigm can be articulated in depth and detail. Problems that the paradigm cannot resolve are rejected as “metaphysical” or the concern of another discipline. (E.g., science cannot prove or disprove the continuation of consciousness after death; it remains, therefore, a matter of “faith.”)

The Importance of The Box

Kuhn says that “normal science” (i.e., “the activity in which most scientists inevitably spend almost all their time”) is an attempt to force nature “into the conceptual boxes supplied by professional education.” In other words, our training—in science or in other areas—tells us which items in the world of stimuli, experience, data, and sensation we should notice and pay attention to and which pieces are irrelevant or unimportant and can be ignored. Normal science strives “to bring theory and fact into closer agreement.” The paradigm’s raison d’être is to provide a framework for research that applies theory; the paradigm dictates what will be studied and how it will be studied. It also determines which results are valued and which are considered worthless (e.g., “mere” facts that do not advance understanding of the matters being studied). The placebo effect may merit investigation by some other discipline, but bears no relation to the question of a drug’s effectiveness in treating a particular disorder.

Commitment to a paradigm is essential; we must believe in what we are doing, or how could we invest the time, energy, and resources necessary to succeed in our endeavors? The firefighter must believe he (or she) has the necessary training and ability to rescue trapped inhabitants of a burning building before entering; the cult followers must believe they are on their way to a better life when they follow their leader’s instructions to drink cyanide-laced punch. Many of our choices in life are influenced by our beliefs and assumptions—and the stakes can be high.

If you are an astronomer and you believe that all the planets in our solar system have been discovered, you will initially attempt to identify an unknown celestial body as a comet or a star—which is exactly what happened for a century, until Sir William Herschel identified the planet Uranus after studying its orbit. (Of course, the community of astronomers decides what qualifies as a “planet”–a term that had no official definition until 2006, when the International
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