April Fool’s Day by Bryce Courtenay is the well-known Australian author’s memoir of love for his son, Damon, a haemophiliac who was one of the first Australians to contract AIDS through blood transfusion. Damon died at the age of 24 in 1991 after a horrific struggle with an incompetent, largely uncaring and ignorant medical system, the blow of contracting AIDS further compounding the ravages of arthritis that usually cripples hemophiliacs in their teenage years.

Damon was becoming very, very sick with the many diseases that accompany the AIDS virus. His final two years of life should have taken a progressive, deteriorating course. Except there was one brief interlude when he actually began to get better.

One day, Damon visited his father, walking up the hill in record time. Damon, walking with a limp since the doctors had unwisely put a brace on his left leg many years earlier, his feet deformed from years of bleeding, was walking barefoot with comparative ease. His father noticed that his eyes were no longer dulled and had a clarity that he hadn’t seen for years. “I’m cured, Dad!” Damon said. He took a step backwards and raising his hands in the accepted Bruce Lee fighting stance, he chopped into the wooden panel of the front door. Then to my astonishment, he suddenly leapt up and kicked, driving the ball of his left foot into the same part of the door.”

His father writes. But I was suddenly aware that something else was about to occur that we couldn’t possibly understand. I had seen him do enough in these few minutes to put himself into hospital with a series of bleeds which, given his present physical condition, could quite easily set him back for months. And yet, he seemed unharmed. He hadn’t flinched as he’d slammed both the side of his hand and the ball of his foot into the door, nor had he as much as grunted when he jumped from the terrace wall.

Several months earlier, according to his girlfriend, Damon began getting higher and higher and not being able to sleep at night. Celeste thought it was the Ecstasy tablet that he tried a few times that pushed him into a higher state of consciousness, making him not feel pain. His newfound enthusiasm and pain-free body continued even after he stopped taking Ecstasy. The amazing thing was, he hadn’t had a bleed since he started taking Ecstasy, or at least Celeste believed that Ecstasy was the reason for the cessation of bleeding. The Ecstasy could have kick started the mania, but hypomania can also be one of the symptoms of the latter stages of AIDS .

Damon then went on to develop many of the symptoms that most of us reading this blog are familiar with: honorary memberships in secret societies, unusual dress code (Ray-Bans at night!), manic behavior that frightens the family to death.

The bleeds which had occurred during the five weeks since he’d become manic, were all relatively small ones and none of them had transpired from the deliberate and often severe knocks he’d taken. The mind is a truly strange mechanism but, since his childhood, we’d known that bleed followed bump just as surely as night followed day…..Just why and how his mania should prevent the more serious bleeding occurrences remains a huge and still unresolved puzzlement.

Damon’s experience rang a bell with me. I have long said in this blog that someone with a diagnosis of schizophrenia, or bipolar (the two are almost interchangeable) tend to be super healthy people. Dr. Abram Hoffer observed the same robust health in his schizophrenia patients. Of his patients´families he observed that close family members rarely got cancer, as if the condition of schizophrenia conferred a special evolutionary advantage on this group of people. I have also heard that when a person with schizophrenia develops another life threatening condition, such as cancer, the symptoms of schizophrenia go away. There must be researchers who are studying the health benefits conferred (resistance to pain, increased immunity) by mania and schizophrenia, but I am not aware of any. Instead, medical research begins with the premise that there is something wrong with the mind, not something right with it.

Damon subsequently got treated by psychiatry and put on Stelazine and Lithium, another addition to the horrendous cocktail of drugs he was on.

Stelazine, known in medical circles as a chemical straightjacket, when taken in combination with Lithium, is a real bitch; it flattened Damon out so completely that he seemed for a while to be a walking zombie. Damon crazy was difficult to handle and, while his cocked-up enthusiasm and desire to live sometimes took the most bizarre turns and his paranoia was extremely hard to cope with, he was still very much alive, an extreme form of the Damon we loved. Now he seemed dead.

Some months later, when he’d finally recovered from his manic condition, he would confide in Celeste that he missed the certainty, the sense of invincibility, of his own strength in mind and body that the mania had given him. As Damon grew increasingly frail and incapable in the final year of his life, he would sometimes say wistfully to Celeste, “It was so great, Babe! It was the first time in my life I felt completely whole! I was the might Damon. If only I could be well and have that same feeling again!”

Why isn´t medical research focusing on the immune protection of schizophrenia and bipolar? The mind´s sense of invincibility that Damon and others experience when psychotic, translates into ultra-normal good health. Based on my own observations of my son´s seeming imperviousness to the common cold and other aches and pains, I have always been suspicious when someone claims to have physical ailments co-existing with schizophrenia. ´Whatever they have that they think is schizophrenia, I conclude, has been misdiagnosed as schizophenia.

April Fool´s Day is a wonderful memoir that I urge you to read.

I belong to an writers group called Query Tracker. Occasionally I receive e-mails from “experts” in specific topics of interest to writers. This one makes me throw up my hands. Carolyn Kaufman trots out all the stereotypes and the recovery movement seems to have completely passed her by.

Psychology Q&A: Schizophrenia & Police Work? Posted: 08 Aug 2012 06:00 AM PDT Disclaimer: The information provided in this post is intended for writing purposes only and does not represent psychological advice. QUESTION: I keep returning to schizophrenia as an interesting disorder. I’m wondering what exactly can someone who’s schizophrenic (and on his medications) do for a living? Can they be a detective or a police officer? Or is there a better disorder for me to use that would allow them to be a detective or a police officer? I wasn’t sure if schizophrenia would keep them from being employed as such. Also,  is there a positive side to the schizophrenia — a creativity or something along those lines that could be harnessed in the right situations? Finally, what type of inner conflict would someone with schizophrenia have to overcome in order to be successful? ANSWER: Schizophrenia is really one of the most disabling psychological disorders someone can have — only about a third of people with the disorder are able to live independently. By definition, schizophrenia is a psychotic disorder, which means that the person who has it isn’t in touch with reality as other people experience it. Symptoms of psychosis include: Hallucinations: seeing, hearing, feeling, smelling, or tasting things that aren’t there; the most common hallucinations in people with schizophrenia are voices Delusions: believing things that aren’t based in reality despite all evidence and logic to the contrary Disorganization: this doesn’t mean the person is messy; it means their mind is disorganized. This leads to disorganized speech (which means  means that people wander from topic to topic enough that it’s noticeably weird; in extreme cases you get a “word salad,” which means the words are all just jumbled up) and disorganized behavior (which may be silly, childlike, or aggressive, but is always completely purposeless) People with schizophrenia can be articulate and intelligent — John Nash, the man on which A Beautiful Mind was based, is well-spoken and obviously extremely well educated. But he does see and hear things, and he has delusions. Nonetheless, I think it would be very unusual for someone with schizophrenia to be able to be a detective or a police officer, even if he were taking medications. The meds can often suppress the psychotic symptoms, but that doesn’t mean the schizophrenia goes away. And the meds tend to work better for what we call “positive” symptoms (like hallucinations, delusions, and disorganization) than they do for “negative” symptoms like catatonia, apathy, mutism, failing hygiene, and other tendencies to withdraw from society. However, someone who has bipolar disorder (which used to be called manic depression) could be, assuming they’d never been institutionalized.  Like schizophrenia, bipolar disorder that can be crippling, and for some people it can also involve hallucinations and delusions, particularly during a manic phase. I know that you can’t get into the CIA or FBI if you have a history of mental illness of any sort, or have been to therapy for a psychological problem. Though I doubt the police are quite as stringent, they’re still on the lookout for these kinds of disorders. So it would probably need to be something that hasn’t officially been diagnosed. Martin Riggs — Mel Gibson’s character from the Lethal Weapon movies — comes to mind. He’s a great example of a great character who went a little (ok, a lot) crazy and was still a police officer.  If you’re not familiar with the movies, Riggs’s wife dies, and he gets crazy suicidal, which makes him a complete loose cannon. If I had to diagnose Riggs off the top of my head in the first movie, I’d say a major depressive disorder, last (current) episode severe. While some people have begun arguing that people on the schizotypy spectrum (of which schizophrenia is a part) are more creative than others, that creativity is often so different from the way other people think that it may not been seen as creativity…just as weirdness. People with bipolar disorder have more classically been seen as creative, though. They tend to be creative within the “rules” of society — that is, their stuff looks creative, not just bizarre, to other people. There isn’t really an inner conflict someone with schizophrenia has to overcome — it’s very much a biological disorder. So is bipolar disorder, though the person with bipolar disorder may not seem quite as bizarre, and may function more within the norms of society. Also remember that with any disorder there’s a continuum from “not bad” to “really bad” versions of the disorder. So some people will have any given disorder worse than others, based on the genetics and how stressful their environment has been throughout their lives. Less severe cases may respond better to medications and therapy. Remember, if YOU have a psychology in fiction question you want to see answered here, use the Q&A form on my Archetype site or send an email using my QueryTracker email address to the right. (Please use Q&A in your Subject Line!).  Carolyn Kaufman, PsyD‘s book, THE WRITER’S GUIDE TO PSYCHOLOGY: How to Write Accurately About Psychological Disorders, Clinical Treatment, and Human Behavior helps writers avoid common misconceptions and inaccuracies and “get the psych right” in their stories. You can learn more about The Writer’s Guide to Psychology, check out Dr. K’s blog on Psychology Today, or follow her on Facebook or Google+!  If your email address changes, please follow these instructions: 1. Scroll down to the bottom of an email from the QTB and click UNSUBSCRIBE to remove your old email addy from the database. Then 2. Go to http://querytracker.blogspot.

com/ and SUBSCRIBE (on the right-hand side, in the sidebar) with your new address!

http://theamericanscholar.org/living-with-voices/

Good article about the Hearing Voices Network, but disturbing because of the insistence that the Hearing Voices Network claims that childhood sexual abuse is almost always at the root of psychosis. Doesn’t the complexity of human experience defy simple answers?

I’m not a joiner by nature, but occasionally, I find a cause worth joining. One of these is the Mother Bear Community Action Network, or Mother Bear CAN. This network of not just mothers, by the way, is a grassroots response to the hijacking of mental health care by professional psychiatry and psychopharmacology. That’s my own spin on the work that this network does. The Network has an excellent resource section with a reading list that includes Robert Whitaker’s Anatomy of an Epidemic, Thomas Szasz’s The Myth of Mental Illness, and Peter Breggin’s book, Your Drug May be Your Problem. Please read some highlights from the site that I have reprinted below, and sign up to their newsletter for your regular dose of positive and empathetic knowledge about helping to navigate the recovery process for a family member.

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Hope is real
by Larry Drain:

We are all much more than any label. A diagnosis is simply a word used to describe the distress you, a family member or friend may struggle with every day or perhaps only for a short while. Diagnoses can he helpful as a way of making meaning, but they can be harmful for the very same reason. We often give labels far too much power. We let them determine the course of our lives. We hold on to them even when they are no longer useful or true.

We are all much more than our distress. What we value, who and what we care about are central to our lives regardless of our struggles. Our hopes, dreams, strengths and talents say much more about us than whatever makes us a “patient.”

Human beings are resilient. Life is a constant process of change, adjustment and growth. Human beings are designed to face challenges and find new ways to adapt. We can learn to handle life’s challenges by meeting life in each moment. We can ask ourselves, what would be helpful in this moment? What is the next best step? When we get there, we ask again. And again. And again.

Over time we find that we have increased our capacity for change, and we are no longer so fearful of it. Change happens, so does recovery

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At the Core of Mother Bear

Your family should not face a mental health challenge alone. When families come together to support each other, we tap into our instinctual protective and loving power to make mental health care choices that restore hope and promote real and lasting recovery.

Our Mother Bear CAN families embrace the following recovery values:

• Recovery is not only possible; it is expected.

• Emotional distress has many causes and many possible solutions.

• All family members deserve support and education for their own emotional distress.

• Individual and family empowerment are essential for recovery.

• Families, with honest education and support, can play a powerful role in recovery.

• The role and decision to use medication should be carefully considered including documented studies of risks.

• Recovery is a universal human experience that requires patience, hope and encouragement.

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Mother Bear CAN Advisory Committee

Our advisory committee is composed of a diverse group of family members and individuals with lived experience, mental health reform advocates, recovery movement leaders, peer support counselors, recovery and peer-led organization leaders, family recovery education specialists, philanthropists, scientists, and recovery-oriented providers including psychiatrists, psychologists and counselors.

We are grateful to have the support and guidance of many wise bears including those affiliated with

• Center for Psychiatric Rehabilitation at Boston University

• Center for the Study of Empathic Therapy, Education & Living

• CooperRiis Healing Community

• Foundation for Excellence in Mental Health Care

• Icarus Project

• International Network of Integrative Mental Health

• International Society for Ethical Psychology and Psychiatry

• Family Outreach and Response Program

• MindFreedom International

• National Empowerment Center

• Utah Youth Village

Mother Bear CAN actively seeks partnerships with recovery- and family-oriented organizations that share our vision of helping families recover and thrive—emotionally, physically and socially.

I wasn’t at the Heritage Foundation presentation, but I watched the live streaming. Dr. E. Fuller Torrey advocated making mental health care a state responsibility, not a federal one. That argument  strikes me as rearranging the deck chairs on the Titanic, but then Torrey complicated his point further by arguing for benchmarks and incentives that institutions must comply with or they will lose their funding, the carrot and stick approach which he thinks will lead to “good mental health outcomes.” Carrot and stick (emphasis on the stick) technique is also typical of his coercive brand of mental health activism. This strikes me as the same dubious technique used in the educational system, which is called “teaching to the test.” Teaching to the test has all kinds of perverse outcomes.

One positive thing that I took away from the presentation was how Robert Whitaker’s book, Anatomy of an Epidemic, is making inroads. Psychiatrist Sally Satel was talking as if for decades now, people have been encouraged to be on the lowest possible dose of medication, and she went on as if it is perfectly well known that many, if not most, people should be encouraged to get off their drugs. Huh? Well, it wasn’t so long ago, eight years ago in fact, that I was told all kinds of nonsense about the drugs being needed for life, and there were plenty of people around who were on and probably still are on high doses of a antipychotic cocktails. I noticed that E. Fuller Torrey conspicuously avoided looking in Satel’s direction when she was expressing herself. E. Fuller Torrey has done more than most psychiatrists to imbed the image in the mind of the public of a schizophrenic as always needing medication. This is serious mental illness, after all!

Another great positive from the presentation was the dedicated group of people who showed up to make the point that medications, not the federal/state situation, are the real reasons the mental health system and its patients are messed up. What the activists had to say directly contradicted the revisionist history that Dr. Satel was painting. Alaska attorney Jim Gottstein introduced this point, and said that people are dying on average twenty-five years early due to the drugs, and if they’re not dead, they are often disabled. Gottstein and others were there to remind Torrey, Satel, and the Heritage Foundation that psychiatry as practiced has victims. Lawyer Diane Engster made a poignant statement directed to Torrey that she followed his advice, she took her drugs, she used to be thin like Dr. Torrey, but she is one hundred pounds overweight and is disabled because of complications from the drugs. She would love to make the kind of money that Torrey and the others do, but she can’t work because she swallowed what Torrey was dishing out. Dr. Torrey played with his ear while she was speaking. Maybe he was trying to turn down the volume.

There was a lot of discussion about ACT (assisted community treatment) and PACT, and how ACT doesn’t act as well as its enthusiasts tell you it does.

Activist Daniel Hazen from Glens Falls, NY got in the last word. He respectfully disrupted the proceedings to tell the psychiatrists that, contrary to what they were saying, there is mental health care inside the prison system, and it’s coercive. Here’s an animation put together by Lauren Tenney that gives his intervention verbatim.

We owe an immense debt of gratitude to Jim Gottstein, Daniel Hazen, Daniel Fisher, Diane Engster and Yvonne Z. Smith for speaking up on our behalf.

For people who would like to view the presentation, click the WATCH ONLINE button at the Heritage Foundation site. A reminder e-mail will be sent by the Foundation.

The presentation will begin at 12:00 p.m. EST (6 p.m. Central European Time and 5 p.m. in Great Britain/United Kingdom).

With America’s jails and prisons crowded with mentally ill inmates, Medicaid costs soaring, and mentally disabled homeless Americans wandering the streets, it is clear that our mental health system is dysfunctional. What began as a grand and noble experiment has become a costly failure, both in terms of human lives and in terms of dollars. But what needs to be done? E. Fuller Torrey, M.D., a leading psychiatrist and researcher, has written extensively on the problems of U.S. mental health policy and urges fundamental reform based on returning primary responsibility to the states.

& alerts from www.MindFreedom.org mindfreedom-news@lists.mindfreedom.org

4:42 AM (5 hours ago)

to mindfreedom-ne.
MindFreedom International News – please forward

United Human Rights Activism in Mental Health

Urgent Alert — In Less Than 48 Hours:

Activists Use Facebook to Create Instant Protest of Heritage Foundation “Psychiatric Tyranny”

Fest in Washington, D.C., on Wed., 18 July

E. Fuller Torrey, Pusher of Forced Psychiatric Drugging of Americans in their Homes, to Speak

by MindFreedom International

The Heritage Foundation web site claims it is for “limited government” and “individual freedom.”

But this Wednesday, 18 July 2012, this very same Heritage Foundation is spotlighting one of the main crusaders for the very worst of Big Government: psychiatric tyranny.

On Wednesday, July 18, 2012, the Heritage Foundation in Washington D.C., is hosting a talk by E. Fuller Torrey, M.D., widely considered to be one of the top pushers for laws making it easier to force psychiatric drugs into Americans, even if they are living peacefully in their own homes out in the community.

With very short notice, Occupy Psychiatry, a new joint project by the Law Project for Psychiatric Rights (PsychRights) and MindFreedom International, will be at the presentation to counter Torrey’s falsehoods. With less than 48 hours to go before the event, activists are asking people to contact concerned people in the Washington, D.C. area.

People are gathering for a peaceful protest at 11:30 a.m. at 214 Massachusetts Avenue, N.E., Washington, D.C.

For the Facebook “Occupy Torrey Tirade Facebook Event Page” go here:

https://www.facebook.com/events/421705067872976

PsychRights web page news release is here:

http://psychrights.org/pr/120714OccupyEFullerTorreyRelease.htm

PDF version of the PsychRights news release:

http://psychrights.org/PR/120714OccupyEFullerTorreyRelease.pdf

Web page for Heritage Foundation

http://www.heritage.org/events/2012/07/mental-health

To stay in touch with other “instant actions: connect on this new Facebook page:

https://www.facebook.com/OccupyPsychiatry

The Occupy Psychiatry Facebook project emerged from the successful protest of the American Psychiatric Association this Spring, for photos and videos of that event go here:

http://www.mindfreedom.org/apa-5-5-12-protest

HERITAGE FOUNDATION MAKES BIG MISTAKE

The Heritage Foundation may find a lot of others on the right are not pleased. Right wing activists from Rush Limbaugh to Michael Savage have personally blasted the massive promotion of psychiatric drugging, especially in children.

Said David Oaks, Director of MindFreedom International, “There are right wingers and left wingers and libertarians who are true to their ideals, and who are outraged at the crime of extreme psychiatric drugging of the USA population, especially young people. Opposing psychiatric abuse unites a lot of red and blue voters. May the Heritage Foundation find out soon they made a mistake by promoting E. Fuller Torrey’s bizarre, tyrannical, anti-American values.”
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ACTION – Please forward this news to others, especially in Washington, D.C. area.~

If you did not get this alert directly from mindfreedom-news, sign up for this free public alert list here:   http://bit.ly/mfi-news

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Thanks go out to WillSpirit! for alerting me to Elyn Saks’ TEDTalk. Dr. Saks is a University of Southern California professor of law and author of The Center Cannot Hold, her autobiography of her experience with schizophrenia.

If you haven’t yet read The Center Cannot Hold, please put it on your reading list. I gave it a positive review on Amazon. In this video she refers to schizophrenia as a “disease,” and says that she takes medication. In that sense I find that she is a out of step with current research that has not found any brain pathology associated with the condition. The effectiveness of medication to treat the so-called  “disease” is also scientifically questionable. Is the medication effective for her? In a Time Magazine interview here’s what she said in 2007.

What protection does medicine offer you?

It’s very good. The new meds I’m on [Clozapine, an anti-psychotic medication] make the episodes come further apart; they last less long when they happen, and they’re less intense when they happen. So it’s a kind of floor below which I don’t go. When I was on Navane [another anti-psychotic medication] back in New Haven, and the first five or 10 years in L.A., I was teetering on the edge all of the time. A slight breeze would push me over into the land of psychosis. Now, I’m mostly well. I’m mostly thinking clearly. I do have episodes, but it’s not like I’m struggling all of the time to stay on the right side of the line. Read more: http://www.time.com/time/arts/article/0,8599,1656592,00.html#ixzz20JPa0aNH

From reading her book I understood that the only therapy Elyn Saks underwent was years of Kleinian psychotherapy. As far as I’m aware, she doesn’t practice yoga or meditation, take vitamin supplements or do anything else to manage her condition. What she does do is work. Work is her focus and her salvation, as she confides in the video. But, she may have added extra stress in the process of hard work, by not allowing herself time to heal, to reflect, to take time off, to really think about what else might be contributing to her psychosis.  She may think that the medications do more for her than they actually do, based on old, and by now, increasingly suspect scientific data. It is also found that people’s symptoms diminish with age and Saks may be attributing to the meds what aging has accomplished. Still, it’s her experience, and she has a right to tell it as she knows it, but I can already see from comments here and there on the web that her story is being used as living proof of the triumph of meds in combination with psychotherapy. By her own admission, she continues to struggle. She is a law professor who actively works against the use of physical restraints, which is admirable. But, many people consider the use of medications to be a human rights abuse – chemical restraints. Will Dr. Saks also use her legal expertise and influence to look at all aspects of human rights abuses in mental health?

Elyn Saks owns her experience and tells her story well, so more power to her. I just hope her story isn’t highjacked into yet another glossy pharmaceuticalized depiction of “the meds are so much better these days that it’s just a question of finding the right ones.”

We all can’t live in Toronto to have access to this program, but we can all tap into the excellent web resources it offers. More importantly, the message it offers is HOPE. The Executive Director, Karyn Baker, says that she wants families to be the light at the end of the tunnel for their relative. In the program’s training course, she writes:

Where I live, I have been isolated from the kind of support systems I might wish to have become involved with, but every time I got down, I learned to look for positive messages on the web for support.

Please check out the program’s website for further hope and inspiration.

Families of those recovering from serious mental health issues are probably one of the last groups within the mental health community to embrace the vision of recovery. Their experience of the mental health system is often one of despair, hopelessness, helplessness, alienation, isolation and discrimination. Families are often told to grieve the loss of their loved one as they knew them, to lower all expectations and to make sure their family member takes their medications. This leads to a family environment that does not promote recovery. How can a family embrace recovery when they feel their lives are full of loss, sadness, anger and power struggles?

Traditionally, family support and education programs mostly focused on teaching families about diagnosis, treatments, mental health resources, crisis intervention, communication skills and self-care. There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the idea that recovery is not possible.

In 2001, the Family Outreach and Response Program was introduced to Recovery. While the program had always worked together with consumer/survivor advocacy organizations and fought against coercive legislation – we really didn’t have a framework for working directly with families that felt empowering for both families and their relatives. The philosophy, values, principles and concepts of recovery filled this void and the first Mental Health Recovery Series was written.

Participants have responded extremely positively to the series, so much so, the request for the Series is so great we are barely able to keep up with demand. We have also trained several service providers locally, provincially, nationally and internationally.

The Series has also acted as a catalyst for families to demand change within the mental health system. The participants have now adopted a critical perspective of the system and want more alternative recovery-oriented services available to their family members.

Families are inquiring as to whether our program can provide some of these alternatives such as the Wellness and Recovery Action Plan, Pathways To Recovery, and Hearing Voices groups. Our program is always striving to expand our services to meet this request.

Eventually, our vision is to have a Family Mental Health Recovery Centre, a community that provides all types of groups, educational and advocacy events that promotes recovery, peer support and is inclusive of the diverse families within the Toronto area.

A graphic distributed on July 4, 2012, by the European Organization for Nuclear Research (CERN) in Geneva shows a representation of traces of a proton-proton collision. Physicists say they have found a new sub-atomic particle in their search for the Higgs boson, the particle that is believed to explain the mystery of mass. Photograph by: Courtesy of the European Organization for Nuclear Research (CERN), AFP/GettyImages

The particle physics experiments conducted at CERN matter to schizophrenia because they are about energy fields and vibrations. The common thread that I’ve been exploring with Chris on this holistic journey is vibration and emotion, one and the same thing.