The best teaching blog on schizophrenia

I wish Ron Unger was on my radar screen when Chris first fell into the mental health system. Ron is a social worker who writes the very thoughtful blog Recovery from “schizophrenia” and other “psychotic disorders.”

What I really appreciate about Ron’s blog is how positive, reassuring and “can do” it is. This is exactly what people need from the outset to instill the belief that yes, their relative has problems, but these problems are understandable and can be overcome.

Here’s a quote from a recent post that shows humility– the recognition that the clients are often the best teachers and that one must adapt to each situation. Contrast this with the many psychiatrists who offer only medications and blanket solutions for individual patients.

I have spent years trying to help people who have problems with voices and other sorts of mental events, and I have noticed that whenever I thing I have “the answer” someone comes along with a situation for which that answer does not work. So a better approach, I think, is to have a number of possible answers or approaches, and then move among them flexibly, choosing what best fits the situation. It is not good to rely too much on any particular method, because each method has disadvantages as well as advantages.

Ron Unger has an incredibly perceptive view of “schizophrenia.”
If you haven’t read Ron’s blog, I urge you to do so. If you have a friend or acquaintance who has recently entered the mental health maze, please point them to this blog.

When I retire

When I retire from my day job in a few years , I think I want to be a hippie. Back in the sixties and seventies, when I actually could have been a hippie, nothing interested me less. I felt uneasy with the drug scene, the people who celebrated it, and if anybody ever referred to me as “Mother” or “my old lady” I would have . . . well, it wouldn’t have happened because I just didn’t do the scene.

Forget the drug culture – I won’t be growing marijuana plants in our back yard, nor will Ian and I be heading to the Burning Man Festival in a painted VW van. The part of the hippie scene that I finally found some respect for is the embracing the mystical, the turning one’s back on materialism and looking at homegrown solutions. I’ve become softened to this by critically looking at the way pharma creates imaginary diseases to sell its products, but I’ve also had my eyes open to the true magic in this world, thanks to the journey I’ve been on. Call it new age, or hippie, that’s where I’m headed.

I will no longer buy products that I don’t need or where a cheaper substitute can be found. It’s not just pharma that creates an imaginary need. Today I was admiring the geraniums on my balcony and see that they’re doing just fine without fertilizer. I no longer have expensive, partially used fertilizer bottles cluttering up the place. I’ve been conditioned to feel that balcony plants need this stuff, just as I was conditioned to believe that the one and only prescription pharmaceutical product I take needs to be taken twice a week. After pestering my doctor, I learned I could take it once a month or less. (She lowered her eyes as she whispered this trade secret to me.) Now there’s a tip not in the product literature. I also found out rather late in life that Vaseline is the best all-round moisturizer.

Maybe what I’m talking about is not actually being a hippie. Perhaps I’m just getting old and wising up. But, I am forever grateful to hippies for understanding certain things early that I picked up on rather late.

Amsterdamned: The blog

There’s not much of an industry in portraying mental illness as fun, which is a real pity ’cause there are a lot of funny things that happen. Finding the humor in mental illness is therapeutic. Instead, most of us are led to expect that it is dreary, soul-destroying and life-long. In short, serious business. Certainly that’s the impression I always came away with after speaking with most, not all, of Chris’s psychiatrists. Our life very quickly took on all the fun of a medical text book.

When we learn to see the lighter side of madness there’s no telling the leaps and bounds we can make towards recovery. I personally feel that laughing and learning to laugh at ourselves means all’s right with the world. I’m putting in a special plug for the blog Amsterdamned. It’s a short blog so you can get up to speed quickly on our hero’s cannabis and mania induced adventures in the Netherlands. He has recently had the good fortune to end up in a Dutch jail (as opposed to a Turkish or even an English jail) and that’s where the second leg of his adventures begin.

Do the needful

“Do the needful” is one of those quaint Indian English expressions, like “donnybrook” and “fisticuffs”. “Sir, I implore you, do the needful!” As I was walking to work today my fertile brain flitted from random thought to random thought, until, for some inexplicable reason, I hit upon “do the needful.” Do the needful for what? I am thinking. For Chris, of course, for others. I got to thinking about do the needful because my mind turned towards street people and my own prejudice tells me that their relatives are not doing the needful for them. We can only blame “the system” and our relative’s own problems for so long before we must look at ourselves and wonder why we are not there for our relative. We have all kinds of excuses, of course that any of our friends and family would sympathize with, but when push comes to shove, we should not abandon our relative to the street. Had the medical profession given us a more hopeful scenario, encouragement and insight, I am convinced that we wouldn’t have so many people on the street.

Doing the needful also means getting your own house in order.

If you don’t read, starting reading.
If you don’t believe, start believing.
If you have no faith, begin developing one.
If you don’t meditate or do yoga, think about starting.
If you don’t believe that something is possible, begin by suspending disbelief.
If you think there is only one way, think again.

My own definition of Low Expressed Emotion

“Low Expressed Emotion is believing that your relative is not mentally ill.”

Belief that your relative is not mentally ill will guide your reaction to any situation involving your relative. Siding with your relative shortens the psychic distance between you, bolsters his or her confidence, and encourages healing.

As ridiculous a concept as anosognosia

In 1851, Dr. Samuel A. Cartwright, a Louisiana surgeon and psychologist, filed a report in the New Orleans Medical and Surgical Journal on diseases prevalent among the South’s black population. Among the various maladies Dr. Cartwright described was ”drapetomania” or ”the disease causing slaves to run away.”

Though a serious mental illness, drapetomania, wrote Dr. Cartwright, was happily quite treatable: ”The cause, in the most of cases, that induces the negro to run away from service, is as much a disease of the mind as any other species of mental alienation, and much more curable. With the advantages of proper medical advice, strictly followed, this troublesome practice that many negroes have of running away can be almost entirely prevented.”

A particularly absurd chapter in the annals of racist 19th-century science? Without question, but for Alvin Poussaint, a clinical professor of psychiatry at Harvard Medical School, Cartwright’s hopelessly unscientific diagnosis is of more than just historical interest. It is a vivid illustration of how definitions of normal and abnormal behavior are shaped by the values of the society that makes them. ”The culture influences what you consider pathology,” says Dr. Poussaint. ”Cartwright saw slavery as normative. So when slaves deviated from the norm, he called them mentally ill. The business of deciding what’s normal and what’s psychopathology gets influenced by culture and politics. It’s not hard science.”

Dr. E. Fuller Torrey has popularized the use of the word “anosognosia” to describe someone who is unable to understand that he is mentally ill. Seriously, please try to pronounce this word while keeping a straight face. Dr. Torrey is also one of the most vocal advocates of outpatient commitment for those judged unlikely to survive safely in the community without supervision, i.e. the mentally ill, although come to think of it, slaves, too, fit this description. While we all dislike seeing visibly disturbed individuals roaming the streets, let’s also keep in mind that society felt the same way about slavery, incarcerating its victims under the guise of helping those who are judged unable to act in their own best interests. Anyone can see there is a problem (either with someone presenting as mentally disturbed or as a runaway slave), but what is at the base of that problem? Do we label everything we can’t or won’t accept as mental illness? Seems like we do. It makes Dr. Thomas Szasz’s belief that mental illness is a social construct very credible.

From the New York Times: Bigotry as Mental Illness or Just Another Norm

God is not “the man upstairs”

Inasmuch as religious feeling is part of the process of growing up in modern society, it is most often relegated to the category of the irrational, and can then be regarded as unprovable, and so, unreal. Logical thought and action appear alone to determine reality. The transcendental gradually diminishes in importance because it is never personally experienced. And the main reason for this is a fundamental misunderstanding of the nature of God. The Divinity is not remote from us at some mystically infinite distance, but inside each one of us. It should inspire us to lead our lives in harmony with the Infinite — to recognize our short existence on Earth as part of the eternal Whole.

For centuries, Western thought has viewed the individual falsely as a being separate from God. In the ‘enlightened’ twentieth century, modern Western thought seems less certain than ever about possible answers to the most ancient human questions about God and the meaning of life. All over the world, new spiritual centres have sprung up, attempting to give answers to these questions — questions which the rigidly held precepts of Church officialdom cannot answer. A kind of ecumenical world religion of the future is in ascendance. It is moving towards self-realization, towards a search for Enlightenment, towards a mystical and consummate vision of the cosmic context of one’s individual existence, and all this by means of contemplation, self-knowledge and meditation.

The most forceful impetus for promoting such an internalization of religion has always come, and will continue to come, from the East, primarily from India. Western Man must now reorient himself in the most literal sense of the word — turn towards the eastern dawn. The Orient is the origin and source of our experience of the inner realm.

From Jesus Lived in India: His Unknown Life Before and After the Crucifixion, by Holger Kersten, Pg. 5

An Amsterdam wedding

We went to a wedding in Amsterdam this week-end (friends of the bride). The bride really likes Chris, so he came, too. The wedding was held in an artists’ club. The groom is a sausage artist. No joke. Apparently, there is an international movement or society of sausage art.

Since the crisis with Chris, I find I have more in common than not with the arty crowd. Brief conversation with a guest: “And what do you write about?” I asked him. “Insanity,” he answered before moving on. Lots of common ground here.

Chris dutifully stuck with us for most of the time and then slipped away to discover Amsterdam on foot after dark. We all know what that might involve.

On our last day in Amsterdam, Chris and I sat at a sidewalk café enjoying the warm sun and a cold Amstel beer. I noticed, as I have from time to time, that Chris wasn’t wearing his glasses yet seemed to have no problem seeing, so I asked him if he could read a sign on a building on Johnny Jordaan Plein, and something in between us and the building, and could he read the tourist pamphlet he was holding. No problem.

“So, Chris, if you can read all of this, why are you wearing glasses?”

“Well,” he said, “I was in ninth grade and I was worried that I wasn’t keeping up academically with the others, and somebody suggested maybe I should have my eyes checked. Now that I think of it, maybe I ended up getting them because the store just wanted to sell me glasses, but when I put on the glasses, I also felt more intelligent.”

“Be that as it may, Chris, but that was the year when you changed both continents and school systems. You ended up actually a year ahead based on your birthday. You had some catching up to do as you could have gone either way grade wise.” What I didn’t mention was that he got a needed academic wake-up call, as he had been quite a slacker before that.

“Hmm, Mom, I wonder if I’ve been using the glasses as a crutch, just like the doctors in the early psychosis program said about the meds being a crutch.”

“Possibly, Chris. In any case, you don’t need glasses to prove your intelligence. Also (I thought of our recent Family Constellation), just because your father wears glasses, doesn’t automatically mean you need glasses. You’re not your father. You don’t have to take on your image of him. You’re you. You’re free to be yourself.”

“But, I’ve been wearing them for twelve years already.”

“You could try not wearing your glasses for a while and see what happens.”

It makes me wonder if he is beginning to “see” things more clearly, meaning that sometimes we wear unnecessary ideas or affect appearances that are not us. We unconsciously think this is how we are expected to be because of a parent. The vision thing is not without precedent in our family and makes me think that glasses are overprescribed, particularly in the country where we currently live. Frames here cost a fortune. Chris’s youngest brother, Taylor, was also prescribed glasses in fourth grade when Ian and I rejected putting him on Ritalin for non-existent Attention Deficit Disorder. We did, however, concede at that time that there was a possible eyesight problem. He was prescribed the usual expensive glasses (and spare pair), and after that he never wore them. That was a medicalizing or “optometrizing” of a childhood behavior.

All of us are fooled at some level. It may take us years to see, keeping in mind that the new vision is, in itself, just another shifting reality.

Design your own T-shirt contest

The silly season is upon us. The NAMI convention runs from June 30th to July 3rd in Washington, DC. Imagine you are picketing their convention center proudly wearing a T-shirt you have designed yourself. You’re MAD as hell.

I just checked the NAMI website and noticed another misery story about schizophrenia with a dire warning about going off your drugs. Oh my gosh, it’s even worse than I imagined.

The Movie
AWARD-WINNING DOCUMENTARY
Unlisted: A Story of Schizophrenia is set to screen on Friday, July 2, at the NAMI National Convention. The gripping documentary depicts the struggle of filmmaker Delaney Ruston, both a daughter and a doctor, to bring her father, who has paranoid schizophrenia, back into her life after hiding from him for ten years.

What starts as a powerful story of reconciliation suddenly shifts when Delaney’s father stops his medications and goes missing.

Steve Lopez, author of The Soloist, has called the film “beautiful and powerful.”

This extraordinary film challenges us to reflect on our own ideas about mental illness, compassion and responsibility.

Here’s something to get you started. Make your messages playful but pointed. All entries will be forwarded to MindFreedom and posted on this blog.

“Off-meds and a danger to society”
E. Fuller Torrey

Unmedicated and roaming the streets

I’m a MAD mother
(Mother against psychiatric Drugging)

SZ, unmedicated, and luvin’ it.

Off-meds, not off my rocker.

Went on a psych trip and all I got was this crummy T-shirt.

Off-meds. Back-off.

Just say “no” (to psych drugs)

Mommy – can I take drugs? No dear, just the antipsychotics the doctor gives you.

NAMI: Las drogas se habla aquí.

Pharma and NAMI: A marriage made in heaven.

The “off-meds” hysteria

A cause worth promoting is to decouple the idea that people with a label of schizophrenia are, by definition, dangerous when off meds. Stephany of Soulful Selpulcher relates the story of how differently her daughter was treated by authorities when she somehow lost the label “schizophrenic.” In the first instance, her twenty-one year old daughter was slammed face down into the dirt by the police because word got out she was a schizophrenic “off meds.” An over-reaction worthy of the best horror films ensued. It’s the “off meds” part here that causes the violent reaction. OMG – they’re off meds! Nuke-em! When, on a different occasion, the same young woman was reported “mute and autistic,” she was treated with respect.

Remember the hunger strike that MindFreedom went on back in 2003 to try to force the American Psychiatric Association to produce actual scientific evidence backing the reason why only the medical theory of ‘chemical imbalances’ predominates when it comes to mental illnesses. (No evidence was produced.)

How about a bunch of people getting together to go down and picket the American Psychiatric Association, the offices of E. Fuller Torrey, the National Alliance for the Mentally Ill (NAMI), most government funded health organizations and other proponents of the idea that people off meds need to be back on them? Not just any bunch of people but a bunch of people who got the label SZ and are fully capable of functioning off their meds. They can hold up signs saying “I’m off meds. What are you going to do about it?” Or, “I’m off meds. What next?” or “Off meds doesn’t mean off my rocker.” How about “Off meds – Back off!”