Holistic Recovery from Schizophrenia

Bob Chiarelli is an Ottawa and provincial politician who is contemplating a bid for the Ontario Liberal leadership. This story appeared today in the Ottawa Citizen.

It’s frustrating for me that no comments on this article are allowed, and I assume it is a way of protecting the man and the position from some of the more outrageous things that the public likes to say in comment boxes. If comments were allowed, I would respectfully take issue with the dismal depiction of schizophrenia as a life long brain disorder and chemical imbalance, and with the notion expressed in the article that “medications are so much better” these days – an opinion that is compromised by the mounting evidence about the ineffectiveness of the drugs and the side effects.  I was astonished to read that Chiarelli’s son Christopher was on 100 pills a day when he was first hospitalized. 100 pills a day? Did I read that right?

My sympathy is very much with Mr. Chiarelli and his family in their bereavement. My issue is with the continued spreading of pessismism, by the media and through the media, about “schizophrenia.” How can one recover or help others to recover when the condition is draped in black cloth? So called “mental” illness is considered after all, mental, and therefore IS particularly amenable to a positive thinking approach.

Casual readers of the Citizen story will come away with the same dismal view of schizophrenia that has the effect of preventing the public at large from learning that, properly understood and handled, “schizophrenia” is not a life-time sentence. (Talk about stigma!) When I read articles like this, I ask myself, what if members of my extended family read this?  Would they assume my son will eventually work full time, get married and lead an otherwise productive life, OR, would they, like the general public absorb the pessimistic message? My guess is the latter.  Unlike me, my family hasn’t needed to be up to speed on the latest research and controversies about the label, so they may rely on articles like these to tell them what’s what.

I hope that Mr. Chiarelli will continue to work for mental health organizations, and will keep an open mind about the good news coming out of today’s recovery movement.

Dr. Steve Balt, psychiatrist and editor-in-chief, The Carlat Psychiatry Report, and Dr. Richard Friedman, director, Psychopharmacology Clinic, Weill Cornell Medical College

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NEAL CONAN, HOST:

This is TALK OF THE NATION. I’m Neal Conan in Washington. Just about everyone’s image of a psychiatrist’s office includes a long couch, dim lights and a doctor with a notepad asking: And how did that make you feel? A stereotype, of course, and way out of date at that. Over the past 20 years, few professions have seen more change than psychiatry.

Weekly, 45-minute appointments are largely a thing of the past. Many psychiatrists see patients for 15 minutes, one after another. Instead of listening, they ask a series of questions, write out prescriptions, and refer their patients to a psychologist or to a social worker for therapy.

While some in mental health circles feel these changes are necessary, others worry they hurt both patients and doctors. We want to hear from psychiatrists in our audience today. How has your practice changed? Give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation by going on our website. That’s at npr.org. Click on TALK OF THE NATION.

Read the rest of the transcript and listen to the audio link.

There is an interesting article on giftedness published in 1999  by the Davidson Institute for Talent Development, The impact of giftedness on psychological well-being. This is quite a good article, that makes me look at a possible cause/mislabelling of schizophrenia in a way I had not fully considered before. What got me thinking was a conversation I had this morning with a colleague about his sixteen year old son. I came away from our discussion wondering if schizophrenia and other mental health problems often crop up in adolescence as adjustment and maturity difficulties, as this article hypothesizes. I have thought the same thing, but not directly in relation to the double-edged sword of having a high I.Q. Certainly, in Chris’s case, as a child, he easily grasped academic material without putting any of his personality into the process. Perhaps my mistake was thinking that he would start to work, as lots of teenage boys do, when push comes to shove, sometime in the high school years. I should have picked up on the signal that Chris hadn’t learned to challenge himself and put himself in win/lose situations at an early age. He missed out on a necessary developmental stage.

I don’t want to make this look that any reasonably bright person who has had an easy time of it for a while academically, can fall into the horror of psychosis, but perhaps a key ingredient here is not just being bright, but being acutely sensitive.   According to my colleague, his son has been hospitalized a couple of times due to severe anxiety, has run away from hopitals and home on several occasions, and has had huge difficulties with school attendance. It was only this past year that a teacher suggested that his unwillingness to learn might be related to double-edged gift of a high I.Q. High I.Q. children often don’t develop good study habits or a need to perserve, because their intelligence has provided a short term fix when they are young. Anxiety kicks in more and more as the child moves into the teen-age years and must learn better coping skills. At this point, they panic. In some or many cases, the teenager will be given a mental health label, and treated by the mental health system in terms of depression, bipolar, schizophrenia, etc. My friend said that his son was relieved to have his problems cast in a different framework – rather than “crazy” it is his intellect that has been his enemy. It remains to be seen, his father told me, how his son will adapt to a new school with a different pedagogical approach than what he was used to, but so far, he is eager to go to school each morning.

There is a long history of interest in how giftedness affects psychological well-being (Berndt, Kaiser, & Van Aalst, 1982; Eysenck, 1995; Freeman, 1983; Hollingworth, 1942; Parker & Mills, 1996; Ramaseshan, 1957; Reynolds & Bradley, 1983; Richards, 1989; Strang, 1950; Watson, 1965). During the last 50 years, two conflicting views prevailed. The first is that gifted children are generally better adjusted than their nongifted peers; that giftedness protects children from maladjustment. This view hypothesized that the gifted are capable of greater understanding of self and others due to their cognitive capacities and therefore cope better with stress, conflicts and developmental dyssynchrony than their peers. Studies supporting this view report that gifted children demonstrate better adjustment than their average peers when measured on a variety of factors (Baker, 1995; Jacobs, 1971; Kaiser, Berndt, & Stanley, 1987; Neihart, 1991; Ramasheshan, 1957; Scholwinski & Reynols, 1985).

The second view is that gifted children are more at-risk for adjustment problems than their nongifted peers, that giftedness increases a child’s vulnerability to adjustment difficulties. Supporters of this view believe that gifted children are at greater risk for emotional and social problems, particularly during adolescence and adulthood. Their hypothesis is that the gifted are more sensitive to interpersonal conflicts and experience greater degrees of alienation and stress than do their peers as a result of their cognitive capacities.

Read the rest here

Thanks to everyone who sent me encouraging words and helpful comments. I changed the original title of this post from “crisis averted” to “crisis postponed” because the crisis did, in fact, happen, and there is always the possibility of a new crisis somewhere in the future.  Such is life. Due to the events of the last few days, I’m trying to be more philosophical about the need for Chris to be back on a medication. We had to grab an additional weapon that might stand a chance of stopping his growing anxiety, emotionalism and negative self-image. I’ve seen in the past where this can lead, and it was the hospital.

Not that I have changed my mind and think that the drugs are safe or particularly effective, but, they can work in a pinch, and often they do work to shut down the symptoms I described above.  (I’ll not go into the side effects in this post. We all know them, and the first visible one, even at a low dose, is usually weight gain.) Vigilance is needed on everyone’s part  (especially Dr. Stern’s) to maintain the drug at the lowest dose for the shortest period while continuing to find other ways of making Chris even more resilient the next time a crisis looms.

I think it’s important to point out that a supportive family and intensive psychotherapy didn’t stop the crisis from happening, and based on my past experience, won’t necessarily prevent it from getting worse. But, with all the holistic interventions Chris has undergone in the past eight years, he’s in a much better position to not prolong this latest crisis. Ian and I acted quite business as usual with Chris and did not aggravate the situation by over-reacting.

Chris agreed to the resumption of Abilify, and seemed back to whatever his normal is the following day. He’s keeping up with his musical theater practices and finally bought himself a cell phone so he could keep better track of his appointments and his growing group of friends. Ian and I picked up where we left off with him, and are no longer walking around in a state of fear.

Some people may think about the medication, well, what’s the big deal? Everybody knows that low dose is best. Well, that’s not exactly the way the doctors presented this to me eight years ago. Eight years ago nobody I spoke with mentioned low dose or a single medication only. I had to do my own homework, and was treated like an idiot who didn’t understand the problem. Now, lowest possible dose and fewest drugs are on everybody’s lips. To get Chris to a low dose of one drug only, took a lot of arguing and willingness to change doctors on my part. Leonard Cohen’s crack of light getting in, at least where psychiatry is concerned, is largely thanks to the growing stridency of the psychiatric survivor movement.

Two articles caught my attention over the week-end, both having to do with coercive psychiatry. The first is a book review of who got sent to asylums in Victorian England, and the second is an in-depth  look by social worker Jack Carney at New York State’s Kendra’s Law, Dr. E. Fuller Torrey and DJ Jaffe.

Inconvenient People: Lunacy, Liberty and the Mad Doctors in Victorian England, by Sarah Wise, Bodley Head RRP£20, 496 pages

The most potent image of Victorian insanity in popular culture is that of the “clothed hyena” Bertha, the mad wife in Charlotte Brontë’s Jane Eyre. It is, writes Sarah Wise in Inconvenient People, “perhaps the most vicious depiction of an insane person to have been committed to paper”.

Yet in 1847, when the novel was published, Mr Rochester’s decision not to place Bertha in an institution was intended to be read as “a mark of his nobility, not perversity, or brutality”. Through vivid case histories, Wise’s fascinating book traces almost a century of legislation dealing with the insane.

Bertha’s plight gave rise to a celebrated work of feminist literary scholarship, Sandra Gilbert and Susan Gubar’s The Madwoman in the Attic (1979). But Wise seeks to refute the notion that the 19th-century lunacy laws were yet another manifestation of male dominance and female victimisation. Her research indicates that men were just as likely to be “victims of malicious asylum incarceration”; perhaps more so, given that these cases often revolved around money.

There are some villainous mothers here, seeking to regain control of a son’s inheritance, or prevent an unsuitable match. In 1829, Edward Davies, a wealthy young tea-broker of endearingly eccentric habits, was dragged from a London coffee house by two burly men who tried to bundle him into a cab. Such force angered the public and a mob formed to prevent the abduction. Wise shows how the robust notion of English liberty trumping all other considerations declined as the century progressed, allowing state intervention in previously sacrosanct areas: within families or even marriage. (Emphasis my own)

Read the rest of this fascinating book review here

Fast forward from Victorian England to New York State today.

More on New York’s Kendra’s Law: Opponents Lining Up for Decisive Battle in 2015
By Jack Carney, DSW

“I sit on a man’s back, choking him and making him carry me, and yet assure myself and others that I am sorry for him and wish to ease his lot by all possible means — except by getting off his back.” Leo Tolstoy, Writings on Civil Disobedience and Nonviolence (1886)

This article is about coercion in its various forms – that which is direct, unequivocal, almost thuggish, and that which is more subtle, usually masked as well-meaning, referred to by David Oaks as “velvet gloved.”…..
……
For the past twenty-five years and more, E. Fuller Torrey has pushed the notion that persons diagnosed with serious mental illnesses, particularly schizophrenia, are so dangerous and potentially violent that they must be treated, i.e., medicated, with or without their consent. His basic strategy has been to pursue, state by state, the passage of outpatient treatment commitment legislation, which effort has been facilitated by his long collaboration with NAMI and by his Treatment Advocacy Center, founded by him in 1998. He has been quite successful in this endeavor – to date, 42 states have passed involuntary outpatient commitment laws – and he appears to have set his sights on Kendra’s Law and changing its status from temporary to permanent. A preview of his pursuit of that objective was on display this past summer, when two police officers were stabbed by persons presumed to be mentally ill and a great clamor was raised in much of the media to expand Kendra’s Law. Civil rights and peer/survivor advocates rallied and beat back the effort, convincing State legislators that the expansion of treatment services was the more effective remedy not the addition of coercive amendments to the existing Law. Perhaps not the ideal response for those of us who’d prefer to see the mental health system shrink, but an indication of the continuing influence of civil libertarian arguments in liberal New York.

Read more here

It’s very exciting to see a growing number of documentary films on mental health recovery, focusing on the current problems of the mental health care system, and the alternatives to the status quo. The latest such film is HEALING VOICES. But, making the film a reality takes money.  Most of us are hard pressed these days to donate, but we can do so for as little as $1.00. Dollars add up.

HEALING VOICES is a feature-length documentary film examining mainstream mental healthcare and psychiatry in the United States.

See the trailer on the Kickstarter site and consider a donation to the cause.

Launched: Sep 6, 2012

WHAT IS THIS FILM ABOUT ?

Through the lens of individuals at various stages of their mental health story, HEALING VOICES will investigate topics including the stigma of psychiatric diagnoses, the role of trauma, pharmacology, alternatives to the Western one-size-fits-all medical model, and the power of storytelling in recovery.

WHO IS STEERING THE SHIP ?

The film is directed by PJ Moynihan of Digital Eyes Film, a US-based independent production company whose work in the field of mental health and recovery alternatives represents the growing body of evidence around progressive ways we as a society can support people experiencing mental health issues.

WHAT WAS THE GENESIS OF THIS PROJECT ?

Moynihan partnered with co-Producer and psychiatric survivor Oryx Cohen to create a short film for a mental health advocacy group that Cohen helped found, to be featured on Forbes.com. Accompanied by a written pitch featuring the personal account of Cohen’s friend and fellow activist Will Hall, it became one of the most highly viewed stories on the entire Forbes site for several days running. This impassioned response suggested a critical need to raise the level of dialogue around mental health issues, and gave rise to the concept for a feature-length documentary.

Read more about this project

A journalist since 1968, Ken Braiterman has been advocating for recovery- and trauma-informed services since 1977, full-time since 1997. He is board chair of Wellness Wordworks, a certified advanced WRAP trainer, former chair of the NH Mental Health Consumer Advocacy Council, and a lecturer at the NH Police Academy and NH Hospital. A prolific writer and compelling speaker, he can be reached at kenbrait@gmail.com.


Why Mainstream Media Ignore Our Movement or Get It Wrong
by Ken Braitherman

Having been a news reporter for a small-city daily for many years, I know some reasons why mainstream media ignore our movement, or get it wrong. that have nothing to do with hostility or being bought by Big Pharma. Advocates can do something about it with their local media, but it’s an uphill struggle that requires some awareness of the problems they face every day.

The built-in limitations of daily journalism have gotten much worse since I left the business. Mostly a lack of space and staff time. Space for news shrinks in proportion to the shrinking advertising.

Staffs keep shrinking, but the number of important subjects does not, Newspapers are fighting a losing battle to maintain quality and journalistic standards as fewer people struggle to do the same amount of work.

And there are so many stories a local paper is required to cover, like the school board, cops, local elections, and city council. Mental health stories are required only when someone goes on a shooting spree.

Read Ken’s advice about the steps you can take to approach your local newspaper.

A few days ago, Dr. Stern, Chris’s psychiatrist recommended that he go back on Abilify. I was dumbfounded! My observations were that Chris had been doing particularly well in the past weeks. He keeps up with his musical theater work, he was a project leader on a volunteer day, and he recently invited a woman friend over for dinner. A potential love interest is always promising news, IMHO.

So I e-mailed Dr. Stern asking her what she saw that I didn’t. And in return I got a list of behaviors that Chris was showing that were causing Dr. Stern to think he should be back on a low dose of Abilify for the time being. He was continuously late for his appointments, he kept forgetting to buy an appointment book (despite her many reminders)  he was talking very negatively about himself and his body movements were becoming less coordinated. According to Dr. Stern, he is showing prodromal symptoms. For several months, Dr. Stern has been taking a wait and see attitude with regard to possibly reinstating Chris’s med.

Before telling Ian (my husband) about this latest development, I asked him how he thought Chris was doing. “Getting worse” wasn’t his answer. He thought for a while, probably wondering what answer I was hoping he would say, and then said something to the effect that he’s doing okay, there’s always room for improvement, etc.  

Once I divulged to Ian what Dr. Stern had to say, then he said he could see what she was talking about. He was all for getting Chris back on a medication.

I know what Dr. Stern is talking about. I noticed that Chris seemed more anxious for a while, and then the anxiety subsided.  He has been dragging himself to his weekly appointments with Dr. Stern for ever, it seems, and he’s often late.  I wonder if Chris is more anxious in the presence of Dr. Stern. I also wonder if Chris is sick and tired of seeing her twice a week, while he continues to have nothing to fill his days with. I’d be depressed, too. Is his showing up late for his appointments a passive reminder that he doesn’t want to be there, anymore? He seems to have no trouble arriving for his rehearsals on time.  For now, anyway.

The cyclical nature of the past eight years has taught me that things may seem good for a really long time, there is always the danger of a backslide.

I can bitch about the fact that Dr. Stern’s twice a week psychotherapy hasn’t fixed Chris, and his occupational therapist hasn’t managed to get Chris occupied with work, but neither can I ignore their observations.

The last time Chris relapsed was when his youngest brother went away to college, the same period when Chris was finally off all his medications. Is this coincidence or not? I honestly don’t know. When I asked Chris at the time, why he relapsed, his answer was that he missed having Taylor around. With his little brother gone, he got more and more weepy, and he took on all of the prodromal symptoms of what is called “psychosis,” which eventually put him back in the hospital and back on medication. This time around, our middle son, Alex, has moved out. Sept. 15th to be precise. Chris is already expressing his sadness at not having Alex around, even if he only saw Alex for a minute in the morning or a little bit a night.

Dr. Stern acted fast to hopefully turn off the early signs  of future relapse. I say, hopefully, because I just don’t know what helps prevent relapse and what doesn’t. I’ve feel I’ve looked at the question from all angles and still come up short. What I do think I know is that, at this stage of Chris’s evolution, having regular work and, better yet, paid work during the day, and cultivating friendships in the workplace might go a long way to help his depression. I say “might” because I really don’t know what recovery is all about. Everybody has a theory. I can’t make recovery happen for Chris. I can guide, I can step back, I can supply him with information, but at some point I give up.

The first step is to break Chris’s unhappiness before it gets out of control, and if this has to be a chemical cosh, it will just have to be. I’ve tried all kinds of non-drug alternatives that have increased his resilience. He’s just not 100% resilient, yet.  I will ignore all the doom and gloom information about antipsychotic drugs and their side effects, because it’s in my best interests now to stay calm. Antipsychotics have their place, and they may be the only tool at one’s disposal during a crisis that can stabilize the situation quickly.

In the meantime, here’s what I’m doing to handle this crisis, in no particular order.

• I’m trying to be positive and upbeat.
• I’m using mindfulness techniques and visualizations.
• I’m giving Chris practical advice (and, yes a few ultimatums) for organizing himself. One is get a mobile phone by Friday and load all of his contact numbers into it. Two is to get a bus pass. No more excuses of being late to appointments because he doesn’t have change for the bus.
• I’m trying to put this latest piece of news in perspective. Chris has generally been doing well, so this is just a bump on the road to eventual full recovery.
• I’m taking a renewed interest in helping him find his way.

Get Behind Open Dialogue Movement for Mental Health

Target: US Department of Health and Human Services  
Sponsored by: Susan V  

Dr. Peter Lynch has released a new video in his series exposing misinformation that has dominated the mental healthcare industry far too long.

He, among others, says it’s not true that chemical imbalances in the brain cause mental illness, that psychiatry is solidly grounded in science or that its drugs correct any so-called imbalances. Also false, says Lynch, is that psychiatry and drugs are the best we have to deal with mental illness – that no other treatment options exist.

The real problem, he says, is not brain pathology. “It is emotional distress.”

And Dr. Jaakko Seikkula would agree. In the 1980s Seikkula and a team in Tornio, Finland developed an innovative treatment program that focuses on alleviating the emotional trauma of those in distress. This “Open Dialogue” has consistently reduced the need for hospitalization and medication and also reduced relapse “when compared with treatment as usual.”

With PTSD on the rise, exacerbated by two wars and added economic stress, it is destructive for the US DHHS to continue supporting the old myths about mental illness, while ignoring this new and effective treatment that the Institute for Dialogic Practice is teaching within the US.

Tell the Dept of Health to put full steam behind the Open Dialogue movement.

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