Saturday, July 31, 2010

Di Caprio's subconscious just another action film

Chris and I just got back from seeing Inception, the latest Hollywood foray into lucid dreaming. The twist here is in planting an idea by hacking into some else's mind and manipulating their dream state.

My dream state is pretty tame compared to all the machine guns, car chases and explosions that go on in Hollywood's sleep. "Chris," I said, "are your dreams like this?" Apparently they are. Is this a guy thing? Mine are less like Playstation games and more like Alice in Wonderland. I am too female and too old to enjoy car chases and machine guns.

The plot was convoluted. Ellen Page, the spunky tiny teen of Juno fame, played her latest spunky tiny post-teen rather poorly. She was there simply as a prop to restate the complex plot to the confused viewer - "So, tell me again what you are planning to do?"

There were two things that I pulled from the movie that I found interesting. The first is when the dying rich father says to his son - "no, you are wrong I wasn't disappointed that you weren't like me, I was disappointed that you tried to be." That was decently deep for an action film.

The other nugget that perked me up was the repeated comment that if you think people are staring at you (paranoia) you are actually in a dream state. The script claimed that you can get a better handle on knowing which state you are in by carrying with you a talisman. If you check and it's there, you know you aren't dreaming. (Can anyone out there in bloggerland validate this idea?)

Since Chris earlier today claimed that people were staring at him for some trivial way he wore his belt, I simply reminisced with him about the comment from the movie and left it at that. I am learning to plant ideas with someone else and slowly let them germinate. In the past, particularly in relation to Chris's crisis, I was inclined to immediately take up a point, discuss it and use it as a jumping off point for broader lessons in life. Now I prefer to keep my mouth shut and let ideas grow.

Thursday, July 29, 2010

Study linking anxiety and religious extremism

Perhaps my recent musings about my friends' daughter were not so far off. The second paragraph below goes into the usual psychobabble about neural wiring. To which I say, anxious parent, anxious child. (See my portrait in blue on this blog. Incidentally, the "mothering" one doesn't have to be the mother. In our friends' case, I would say the father is the mothering one.)

In a research study published by York University in Canada
The researchers found that religious zeal reactions were most pronounced among participants with bold personalities (defined as having high self-esteem and being action-oriented, eager and tenacious) who were already vulnerable to anxiety and felt most hopeless about their daily goals in life.

Findings published last year in the journal Psychological Science by the same authors and collaborators at the University of Toronto found that strong religious beliefs are associated with low activity in the anterior cingulate cortex, the part of the brain that becomes active in anxious predicaments.

I have a small comfort zone, therefore I must be normal

If normal is becoming a shrunken pool due to overdiagnosis of mental illness, and alarming clinical psychologists like Til Wykes, I actually find this shock and horror rather amusing (especially coming from a psychologist.) Let me explain.

When you are on the outside looking in, in terms of what "normal" people call schizophrenia, you assume the person is mentally ill, because, really, the behavior can be off the charts weird. So "normal" people run away. They are so horror struck that they assume whatever it they are seeing and hearing can't possibly be normal and they ask that someone (a psychiatrist) put a stop to this behavior immediately. This almost always involves using medications to solve the problem. However, medications don't actually fix the problem, they just sedate the person and more often than not, those pesky abnormal thoughts are just waiting around to break through once more.

Just because you or I think we would never react so strangely to a problem, doesn't mean that doing so is abnormal. Psychosis is a well-trod path. Venture out beyond your comfort zone of normal and you will begin to understand.

I wish to thank Beyond Meds for bringing this wonderful quote to my attention.

Anyone who wants to know the human psyche will learn next to nothing from experimental psychology. He would be better advised to abandon exact science, put away his scholar’s gown, bid farewell to his study, and wander with human heart throughout the world. There in the horrors of prisons, lunatic asylums and hospitals, in drab suburban pubs, in brothels and gambling-hells, in the salons of the elegant, the Stock Exchanges, socialist meetings, churches, revivalist gatherings and ecstatic sects, through love and hate, through the experience of passion in every form in his own body, he would reap richer stores of knowledge than text-books a foot thick could give him, and he will know how to doctor the sick with a real knowledge of the human soul. — Carl Jung

Wednesday, July 28, 2010

The upside of overdiagnosing

From Reuters Group plc on the proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM)

Citing examples of new additions like "mild anxiety depression," "psychosis risk syndrome," and "temper dysregulation disorder," they said many people previously seen as perfectly healthy could in future be told they are ill.

"It's leaking into normality. It is shrinking the pool of what is normal to a puddle," said Til Wykes of the Institute of Psychiatry at Kings College London.

Labeling everybody as mentally ill kind of puts schizophrenia into perspective, then, doesn't it? The ever elusive "normal" is becoming a shrunken pool.

Tuesday, July 27, 2010

Progress report from Chris

In the cranial-sacral therapy I have been doing for a few weeks, comfort is key, the therapy is intimate, you are placing your body into the therapist's hands so it’s best to make the most of your time and listen to your feelings. At our last session the therapist stressed the importance of “mind-body dialogue,” keeping our thoughts firmly grounded in our real-world self. Strong feelings and judgments have their effect on the physical body and during the sessions I am encouraged to notice how certain thoughts are received, if they manifest themselves as tension.

Sound therapy continues to be a source of wonder and amazement. I’d never pay as much attention to a teacher at school or my GP, probably because my ST has all these cool gadgets, a lakefront view and a portrait from the adult version of “The Little Mermaid.” At each session after he plays his kaleidoscopic mix tape we share our impressions of what happened. I say this allows me to see clearly into my past, and he says each sound has with it a certain feeling associated with it. The channel of time is opened up.

Dr. Stern, my psychiatrist has all but said “reduce Serdolect at your own rate.” She genuinely supports my coming off this particular medication and is leaving it up to me. I’m down to about six milligrams from eight, and I could be as low as four by now if I paid more attention to the schedule for reduction prescribed online. Despite the lazy days of summer I’m more than willing to go for a jog in the morning or swim in the evening, partly as an effort to keep my weight down which has shot up again even over the past month.

I wish I’d paid more attention to my brother’s advice to find a job or a course to pass the summer because I don’t have anything to look forward to from one week to the next. Like many other hopefuls to the job market I’m throwing in my lot with a local technical school for computer training in the fall. It will be tough; I’ll have to work with younger people in a non-native language for me, learning something I’m not absolutely crazy about, but it will hopefully lead to better things. Thankfully there’s someone working with me who better grasps the language and the school’s policies. One of my goals is to find someone who wants to learn English to do things together and share language skills.

Chris Forbes

Monday, July 26, 2010

My sweet Lord

The week-end was a whirlwind of consecutive but separate dinners out with two sets of friends who we haven't seen for a while. The first couple also have three sons like us and their youngest is now officially depressed, seeing a psychiatrist and having problems with his course work at university. In his younger years he was given therapy for some kind of learning related disabilities (dysgraphia being one.) This pattern of ending up with a new diagnosis beyond learning disabilities around the age of eighteen seems to be not uncommon.

This young man has been seen as "having problems," something not quite right most of his life. I wonder how this image feeds into his sense of well-being and prevents him from being who he is.

Our next set of visiting friends brought their two teenagers with them to the dinner. They are both very bright and engaging. The sixteen year old daughter casually mentioned she was seeing a psychiatrist, so of course, we got talking. Since she seemed so engaged I was trying to figure out the nature of her needing to see a psychiatrist. She was very au courant with her problems, with the jargon, with the limitations of her treatment. She suffers from anxiety. Well, how exactly does this play out, I asked?

What her brother and her agreed on was that there are hours on end when she completely freaks out and makes everyone's life miserable. Still, I was puzzled because she seemed so aware and self-confident. Then it got interesting. She is a very, very religious Christian. Just talking about her passion for Christ was whipping her more and more into a sort of religious ecstasy and about then I decided to switch topics to diffuse a possible melt-down.

Her parents are very religous, especially her father. Her father is the anxious sort, but, like most of us, age has given him some coping skills. His daughter doesn't have that filter. A reasonable guess is that her anxiety is related to being afraid to venture out beyond parental control. I don't believe in Deepak Chopra she said, because he teaches that it's all about happiness. (I think that's a misinterpretation of Chopra.) I don't believe we should live in the now. I want to be with Christ. And, you could tell, she really wanted to be one with Christ. Intense religiosity, in my opinion, is an internal destabilizing force.

From my more pan-Buddhist perspective, I would say a little yoga would temper her fixations.

Waxing philosophical

I made a quick trip to our local drop-in medical clinic this morning before work. My right eardrum was vibrating and I figured it was ear wax. I didn't want to leave it as long as the last time when I was in real pain and had to get my ear flushed out with water. The doctor had a young medical student with him so spent a long time mapping out the problem for his benefit. According to the doctor, the wax was superficial and dragging a hose in wasn't necessary.

For the student's benefit, the old doctor drew some diagrams of the ear with "corridors" leading to the eustachian tube and to the nasal passages. The drawings reminded me of a plumber showing me the cause of the leak or where the wedding ring is lodged. According to the doctor, my nose is a perfect pyramid shape and the narrow bridge can lead to these sorts of problems. "Just take some nose spray and ear drops and have a good day." This is a my long winded way of saying this is what doctors are good at, the mechanics of your body. The doctor is a technician, like your plumber, like your car mechanic.

You can't map out the mind like this and say with any confidence where the blockages are.

Friday, July 23, 2010


My day job is seriously getting in the way of my real passions. (Three more years!) The Internet has done some amazing things. Not only am I slowly getting up to speed on Twitter, but I also now regularly run my English through a German translator and vice versa. I can get the gist of what Germans are writing to me. Google Translate, for German at least, keeps getting better and better. You just move the verb from the end of the sentence and jam it somewhere back in the middle until it all makes sense.

A friend recommends TED Ideas worth spreading and raved about Ethan Zuckerman "listening to global voices." I haven't watched it yet, but thought you might want to get a jump start.

Sure, the web connects the globe, but most of us end up hearing mainly from people just like ourselves. Blogger and technologist Ethan Zuckerman wants to help share the stories of the whole wide world. He talks about clever strategies to open up your Twitter world and read the news in languages you don't even know.

Our mission: Spreading ideas.

We believe passionately in the power of ideas to change attitudes, lives and ultimately, the world. So we're building here a clearinghouse that offers free knowledge and inspiration from the world's most inspired thinkers, and also a community of curious souls to engage with ideas and each other. This site, launched April 2007, is an ever-evolving work in progress, and you're an important part of it. Have an idea? We want to hear from you.

Thursday, July 22, 2010

Lame misuse of antipyschotics

There is a sad storyin the New York Times today of an abused, neglected boy. What caught me eye was this:

About age 12, Mr. Harris-Moore was determined to have several psychiatric conditions, including depression, attention deficit disorder and intermittent explosive disorder, according to a later psychiatric report. He was prescribed antidepressant and antipsychotic drugs.

So he was prescribed antipsychotics, but psychotic wasn't one of his labels. This practice is so widespread it's hard believe in what it is exactly that antipsychotics do. If the drugs are supposed to be needed, what is an antipsychotic supposed to do for someone who doesn't have psychosis? What does an antipsychotic do for people who do have psychosis?

NAMI's ties with the pharmaceutical industry

Today's post is simply a placeholder so I can refer to it in future posts if challenged to "prove" that NAMI cannot be an unbiased source of information about the medications your relative is taking.

Check out the NAMI Corporate Contributions page for the first quarter of 2010. Seeing all those pharmaceutical companies on the list doesn't look like there is much incentive for NAMI to find other sources of funding.

The NAMI webpage states: The list reflects contributions only to the national organization. NAMI state organizations and affiliates are separate entities and where appropriate are established independently as non-profit 501c3 organizations.

All a-twitter

I feel like I am back in junior high. Anything Gianna Kali posts, I want to copy. If she wore leopard skin jackets and smoked cigarettes from a cigarette holder, I'd want to copy that. By posting really interesting articles, her Beyond Meds blog gives me lots of fuel for my own daily post.

I have been meaning to write Gianna to ask her how Twitter works, because I know she Twitters a lot, and I am in the Twitter slow lane. I know she isn't responding to e-mail so I am delighted to read her latest postings about Twitter to get a sense of what I am supposed to do. Now if she would only answer the question: How do I condense my blog link into the least amount of characters, and is it bad form to post my own blog link at all?

Wednesday, July 21, 2010

Akathisia - so that's what it was!

When Chris was home after his first three month stint in the hospital, and while he was enrolled at the day program, he would pace our small apartment constantly. Round and round he went, round the dining room table, then into the living room, then back out to the dining room, round and round and round. Sit down, we would yell, but he couldn't sit down. He was extremely agitated. His eyes also sort of rolled back into his head, giving him that "zombie" look. Chris was on the antidepressant Effexor as well as the antipsychotic Respirdal at that time.

There's the gold standard where doctors, patients and family members know and share what is going on,

From the Family Dysfunction and Mental Health blog
But yes, antidepressants per se can indeed cause increased suicidal ideation, suicidal behavior, and completed suicides. However, I believe this only happens in three very specific situations, all of which can be managed by a competent psychiatrist.

The first situation is when a patient develops a side effect known as akisthesia (sic), which is extreme agitation in which a patient can barely sit still. Milder agitation can also be a side effect. Studies clearly show that a mix of depression and anxiety greatly increases the risk for suicide. The psychiatrist can warn patients about this side effect and tell them to call the doctor if it develops. Tranquilizers usually take care of this problem, but some patients must be switched to a different antidepressant, which may or may not cause that particular side effect.

and then there is the reality:

We just put up with the pacing. Now I find out that there is name to it, "akathesia" and that a competent psychiatrist can manage this. We put up with it because we just figured it was part of the diagnosis. Chris ended up back in the hospital after one month at the day program while they switched his meds. Seems now that all they really needed to do was to get him off the Effexor.

The popping and whistling sounds that Chris made went on much longer. Again, Ian and I figured it was just part of the weird territory of psychosis that we had wandered into. Surely, we figured, Chris was popping and whistling at the day program, and if it was okay with the doctors then it was okay with us. I think this may have been a symptom of tardive dyskinesia, but what do I know? Eventually, he just stopped popping and whistling.

Tuesday, July 20, 2010


And the insurance company didn't even bat an eye. . . This staggering figure is what was billed* to our insurance company for my son between December 2003 and July 2010, for:

1. hospitalizations (three, totalling nine months)
2. Day program (two years)
3. private psychiatrists (two)
4. medications
5. blood tests
6. occupational therapy
7. Tomatis Method (reimbursed under alternative medicine component)

Why doesn't the insurance company make a fuss about this outrageous amount, I naively wonder. I could have saved them thousands by insisting on one drug for no more than three months of each hospitalization. I am convinced we could have avoided the hospitalizations and day program altogether if I had known about and had access to alternative treatments from day one. Had we (and the doctors) not over-reacted at the beginning, had we been told that schizophrenia was an understandable coping mechanism, things would have been different.

This figure does not include the thousand of dollars we paid out of pocket for vitamins, nor does it include sound therapy, the assemblage point shift and cranial-sacral massage. (The Tomatis Method, which I approve of, cost about $5000.) Heck, if the insurance company had agreed to pay for the alternative therapy, and refused to pay for medications, things would have been very different. As it stands, both my husband and I are embarrassed that my son, a relatively normal, intelligent guy who had a huge existential crisis, has cost the system so much money.

The figure actually represents three different currencies, which I am treating at par.

Infomercial for drugs

Oh, for heaven sakes! The New York Times ought to be ashamed of itself.

Attention Disorders Can Take a Toll on Marriage

Monday, July 19, 2010

All about Eve

My theme, that psychiatry threw the baby out with the bath water when it stopped implicating parents in their children's mental health issues, continues.

From a Child & Adolescent Bipolar Foundation blog.

In 1977, a Northern California mother named Eve decided she’d had enough. Eve had raised a child diagnosed schizophrenic and had endured the prevailing thinking by the medical community and society at-large at the time; that her son’s condition was her fault. That something in how she raised him caused his psychotic break with reality during his teens. Trying to get appointments with the local mental health facility administrators was frustrating, and the results of meetings she could get just made her angry. So on October 22nd, Eve and another couple, Tony and Fran, met with seven other concerned families of mentally ill children and formed the California Association of Families of the Mentally Disabled (CAFMD). But, they were just parents. What could nine sets of parents really do?

She explained why she took this dramatic step to the World Congress on Psychiatry that same year. Eve said, “We failed to understand why parents of a child with Leukemia were treated with sympathy and understanding, while parents of a child with schizophrenia were treated with scorn and condemnation.”

I'm old enough to remember the bad old days of parent blaming, which I mainly get a whiff of through the comments of people my own age whose siblings had a diagnosed mental illness (usually schizophrenia.) They tell me that how badly hurt their parents were by the attitude of the psychiatrists that they were at fault. I have no doubts that this is true and awful to experience. Psychiatry could have done a better job of it though, by skillfully and diplomatically promoting family based therapies.

Instead, at the behest of parent organizations like the one started by Eve that eventually became NAMI, psychiatry became pharmaceuticalized. By not taking a stronger stance, based on educating parents about what makes families tick, psychiatry deprived parents of meaningful ways of helping their children. The point of organizations like NAMI, as demonstrated by this quote, was to force psychiatry to retract its thinking that the family environment was largely responsible for major mental health issues. It was a tragedy in the making, because can we really say that there is less mental illness now than there was then, and that more people are leading productive lives? Robert Whitaker's book, Anatomy of an Epidemic, says "no."

What seemed like a justifiable course of action that the CABF article above relates (stop making parents feel bad about their child's mental illness), warped into what we have today, where psychiatrists routinely tell people that they have a brain disease, not a malfunctioning environment. Most psychiatrists will no longer even tolerate a parent pleading with them to help them in some other way beyond the drugs. If you don't already believe this, please read the latest Daniel Carlat interview here. NAMI and CABF have received the bulk of their funding from pharma. The belief that it is just plain wrong to link family trauma to mental health outcomes is seen in the number of people who accept that they have a brain disease. This belief is expressed by the CABF blogger who clearly wants parents to continue to fight the good fight.

I pulled a couple of comments in response to the CABF blog post which illustrates how far the pendulum has swung the other way. The first comment makes me laugh, because, thanks in large part to CABF, pharma and psychiatry's efforts, she wonders if her kid's problem is a circuit burn-out issue (almost like the kid needs to go back to the repair shop.) Poster number 2, if I read this correctly, is taking two drugs and has a nine year old DS (diagnosed son?), who is on a cocktail of drugs.

Comment 1
My seventeen year old son is diagnosed with bi polar disorder. He can be very energetic and try exsessively hard to be "good". on the other hand he can become very irritable, unmotivated and bullyish. Between the cycle of mania and depression he appears to "crash" he behaves as one that has been on heavy drugs and is experiencing withdrawl symptoms. He acts very sedated and calm. Is there something that is taking place in his brain that is similiar to a ciruit burn out that explains this behavior ?

Comment 2
Thank you for that blog- It gave me goosebumps. What an inspiration!

Heather (40) Cymbalta; Seroquel XR
DS (9) BP, ADD, IED (TBD?) 1800 mg Trileptal; 10 mg Abilify; therapeutic level of Keppra; Clonidine for sleep, trying Home School in the fall; DH (39); DD (7); DS (3); Dog

CABF and NAMI are professional organizations that lobby for the brain disease model of mental illness because they won't accept the blindingly obvious, that parents do play a role in their children's mental health problems. Organizations like these have made getting good help for my son more difficult than it need be, because psychiatrists block their ears and will not listen to you if you aren't talking drugs and diseased brains with them. They have been bullied into this position by lobby groups.

Sunday, July 18, 2010

Throwing the baby out with the bathwater

An recent New York Times article is generating a bit of interest in the mental health blogosphere. Accepting that Good Parents Can Plant Bad Seeds has a huge flaw in its reasoning, that faithful reader Marian pointed out in her comment on my recent post on the same article. The author of the NY Times article, Richard A. Friedman, M.D., has grasped the obvious fact that no two siblings are alike, and they will be treated differently by their parents, but then goes on to say that some children are just plain not nice and that parents have a limited role in this outcome. All this would be fine except that clearly the parents in this article are grieving for a relationship that they do not have with their children. Something is bothering them, too.

Oh, how far we have fallen from the parent blaming of the post-war generation. We have fallen so far away from "blaming" the parent, that we continue to do damage of another sort. The damage is in not getting the help that is needed to reap rewards from the relationship and to heal. Better outcomes are being sacrificed these days in order to save face as a parent. Many parents prefer to believe that their child is the one with the problem.

The central pitch of any child psychiatrist now is that the illness is often in the child and that the family responses may aggravate the scene but not wholly create it,” said my colleague Dr. Theodore Shapiro, a child psychiatrist at Weill Cornell Medical College. “The era of ‘there are no bad children, only bad parents’ is gone.

The quoted paragraph is hard for me to swallow, because I believe that psychiatry (which seems to never get it right when it comes to mental illness), threw the baby out with the bath water when it eventually stopped even suggesting that parents may actually have something to do with their child's problems. Psychiatry became the willing handmaiden of pharma, which proclaimed mental illnesses to be brain diseases. The product literature for these dastardly drugs may as well say in big bold letters - Parents - don't even bother to try to work on your relationships with your children because this is a brain disease, nothing you can do about it.

Dr. David Allen picks up on the New York Times article in his blog, Family Dysfunction and Mental Health and he comes to the same conclusions as Marian and me. He then goes on to say "There are types of psychotherapy which can help people repair dysfunctional relationship patterns, solve problems, and reconcile with their loved ones."

I know that relationships between family members are at the heart of this and so do most people who have received a mental health label, but sadly, many parents will miss out on the opportunity to heal their children because they refuse to even consider that something in them doesn't vibrate well with the other person and vice versa. Relationships are a two way street. I have made the same sort observations in my review of After Her Brain Broke. My point about the book was that the author was too afraid to be seen as not the perfect mother that she was actually standing in the way of exploring better help for her daughter.

From my knowledge of Dr. Allen based on his previous blog posts, he loses me when he insists that schizophrenia is a special case unrelated to what is happening in the family and is the result of brain chemistry run amok. That's why, knowing what I know, it amazes me that he can make the following comment and still believe that schizophrenia is a special case.

It is interesting that next to Dr. Friedman's article is a still from the 1956 movie, The Bad Seed, about a pretty little girl from a fine family who develops into a young murderess for no apparent reason. Such things, unless a baby comes out brain damaged in some way, happen only in lurid novels and movies.

So, if I read the previous paragraph correctly, Dr. Allen believes that beneath all behaviors is reasonable cause. The only possible explanations I can think of why Dr. Allen still wants schizophrenia to be a brain disease, is that it is now totally politically incorrect to "blame the parents" when it come to schizophrenia. Psychiatry won't touch that one with a ten foot pole. The other possible explanation is that he truly does believe that people with schizophrenia were brain damaged at birth. This explanation has so far eluded medical science, I wish to point out. I will write more about the origins of this pervasive don't blame the parent attitude in my next blog post.

Friday, July 16, 2010

Shouldn't we demand better statistical outcomes?

I write about alcoholism from time to time in this blog because I feel it has much common ground with schizophrenia. There is the condition itself, which I consider a spiritual conflict, but there is also the framework of Alcoholics Anonymous, involving a program, similar in some ways to the day program that our family was involved with for schizophrenia. AA is run by its members, not by medical professionals. In this regard, it is not like our day program.

No program is above criticism, and there is an interesting piece today from the Huffington Post that raises the question, how come, after seventy-five years of AA there aren't more success stories?

Given that AA started in 1935, that it is still not proven to be successful is beginning to be a bit worrisome. Do drinking and drug problems, alcoholism and addiction, seem to be improving in the United States? (Hint: according to the National Survey on Drug Use and Health, 25 percent of 21-year-old Americans have a diagnosable drug or alcohol problem -- far and away most often an alcohol problem.) Don't you think we might be doing a little better in this area after 75 years?

Robert Whitaker asks these kinds of questions and more in his new book Anatomy of an Epidemic. These kinds of questions kick-started my interest in alternative therapies. Surely, I thought, there should be better outcomes after all these years for schizophrenia than the bleak picture that is usually presented. There are better outcomes, but you've got to do a little digging to find out where they are.

These questions need to be explored, not just for AA but for current approaches to schizophrenia and other mental health conditions. Most people will not recover in a program - they will recover when they get to the bottom of whatever it is that is troubling them and when they begin to accept personal responsibility. That is why, as the article points out, a wide variety of treatment options should be available. There is no one size fits all when it comes to mental health.

What is an acceptable trade-off for the meds?

I realize that if I don't apply myself in this heat, the blog will wilt away. Even though I don't have much to offer these days, you're going to get a post anyway. Here are my latest musings about why I am so against meds when any "reasonable" person can see that meds are an important part of treatment.

Meds are a code word in schizophrenia for the doctor is in charge for life if you aren't careful. Meds never cured anyone, in the context of mental illness, that is. Doctors will be the first to admit this, because after all, there is "no cure" for schizophrenia, is there? There is only management of this "disease." This means that your life is placed in the hands of social workers and doctors and occupational therapists, who will manage your life to death while urging you to take charge of it, which is difficult (though not impossible) to do on meds, as I attempt to illustrate below.

It is axiomatic that an involvement with social workers, doctors and occupational therapists means your life is dysfunctional. This sounds like an obvious slight to generally good people doing difficult jobs, but, they are there to aid the dysfunctional. If you managed your own life better, there would be no need for social workers and doctors. If you want to get functional, you will eventually have to cut the ties that bind.

When I think of why I hate the meds so much, I always think of a lovely young woman in Chris's day program. She was pretty and petite and developed into an absolute butterball on the meds. She went from being socially acceptable and very attractive in terms of appearance to being an outcast based on her appearance. She dropped out of the program for a while and when she reappeared, she had shed all the weight and looked great, but her eyes were very, very sad. Fast forward a few months into the program (and the medications). Her mother and sister continue to be slim and fashionable, and Rosita (not her real name) was once again huge. Setting aside her problems that got her a diagnosis in the first place, Rosita now had a further problem of social stigma based on her weight. She was also now a physical oddity in her own family. No doubt her family felt more pity towards her because of the weight. No doubt she felt it. A young woman her age would be interested in dating - how was this going to happen?

Doctors feel that this is an acceptable trade-off for the meds, which don't cure anyone and supposedly help you manage your life better. At the same time, psychiatrists are offering you no real alternatives to the meds, such as the kind I write about in my blog.
So, yes, I hate the meds because they are symptomatic of the larger problem of hiding unpleasant truths from people while making others glaringly obvious and they prevent doctors from empowering their patients.

Wednesday, July 14, 2010

Angels in God's realm

I just don't have much motivation these days. It's way too hot. I drag myself into work early and leave early as the office isn't air conditioned. When I get home Chris and I drive down to the lake and jump in. We paddle around for a while before driving home and preparing a light meal.

Progress report on Chris: We are in a holding pattern. Chris does lots of volunteer work, such as working at the soup kitchen once a month on Saturday morning. He likes to cook and the food looks good on a plate. He is precise, punctual, thorough, and you can be sure if you ask him to do something, he will do the job well. Last Sunday he filled in for me as an usher at church. His once a week voice lessons are over for the summer and will resume again in Sept. He's reading lots of intellectually challenging books. He also reads the Bible everyday. He is very slowly reducing one of his two meds. But, to speak with him and to observe him from a distance, there is a lag. If you ask him a question, there is a long pause before he answers, if he chooses to answer at all. If you watch him from a distance, you can see that he is hesitant. I used to think this was due the drugs, but I can't blame the drugs for this one. I consider it the physical manifestation of his internal doubts.

Chris has been seeing an occupational therapist for a year now since he left the psych hospital after his relapse. I am trying to be patient with the fact that he seems to be dragging in the area of getting some kind of training, something that will regularly occupy his days. Ian and I have given up on the idea that he will be heading back to university, at least we don't see this happening, if it happens at all, until he is 28 or even 30. We have decided to be philosophical about this because we are determined to be low Expressed Emotion, to give him time to knit together who he is, to come up with his own blueprint. He is being helped in this regard with the sessions with the sound therapist that he undergoes on a regular basis. It takes a long time to go from zero to cruising speed when it comes to personality development.

Still, it would be nice if he got going and had something to occupy his days. He has been talking about a three month computer technician course at a local trades school. I notice that despite professing enthusiasm for this, he manages not to make enrolment a top priority, therefore I am not sure if he will be starting in August or not. Ian and I will be away and it will be up to Chris whether he makes this happen. I feel something in him is holding him back.

Dr. Stern has introduced a new possible and surprising direction for Chris based on the last Constellation that Ian and I undertook where she had been groping to find the right words for his non-earthbound personality characteristics. She feels, in her words, it is "being like a good host for a group of people which might correspond, on a concrete level, to a professional activity in the hotel or tourism business." She recalls his interest in "cooking for the family, for being useful for people, e.g. being helpful for members in the church community, for being a senior student at his college who welcomed first year students, his appeal for high standard places like Grand Hotels, his appeal for being very well dressed, and his interest in learning foreign languages."

On a spiritual calling level Dr. Stern's use of the word "host" is very interesting. Recall that Jung felt that addiction to alcohol (spirits) is a spiritual quest. According to the Catholic Encyclopedia:

The function of the angelic host is expressed by the word "assistance" (Job 1:6; 2:1), and our Lord refers to it as their perpetual occupation (Matthew 18:10). More than once we are told of seven angels whose special function it is thus to "stand before God's throne" (Tobit 12:15; Revelation 8:2-5). The same thought may be intended by "the angel of His presence" (Isaiah 63:9) an expression which also occurs in the pseudo-epigraphical "Testaments of the Twelve Patriarchs.

But these glimpses of life beyond the veil are only occasional. The angels of the Bible generally appear in the role of God's messengers to mankind. They are His instruments by whom He communicates His will to men, and in Jacob's vision they are depicted as ascending and descending the ladder which stretches from earth to heaven while the Eternal Father gazes upon the wanderer below.

When it comes to occupation, Ian and I are still getting used to this possible role for Chris. At first we felt that his always being with us, always wanting to help, never asking anything of himself, was a sign of dependency, but I can see now that there is another way of looking at this, in line with my growing understanding that "schizophrenia" is communication of the highest sort.

Tuesday, July 13, 2010

Family Constellation Therapy might provide some ideas here

From today's New York Times Accepting That Good Parents May Plant Bad Seeds.

But that left open a fundamental question: If the young man did not suffer from any demonstrable psychiatric disorder, just what was his problem?

Monday, July 12, 2010

I think I know why Larry David didn't return the call

The New Yorker ran an article back in October 2007 entitled We are All Larry David. Larry David is the creator, along with Jerry Seinfeld, of the television mega hit Seinfeld. If you have ever seen his subsequent show, Curb Your Enthusiasm in which Larry David is front and center, Larry David makes Woody Allen look like a people person. He seems to have no redeeming qualities. He is neurotic, horribly inept in his personal relationships, and well, in my opinion, not at all funny. My son Alex loves Larry David, demonstrating once again that there is no accounting for taste, and I respect that.

The New Yorker article is about a second year psychology student who worked for a summer teaching social skills to a group of "schizophrenic patients" at a state hospital. He was having a difficult time trying to get his patients to role play everyday social situations until he hit on a brilliant idea. And do you know what this brilliant idea was? Watching television with his patients! Not just any TV show but Curb Your Enthusiasm, which really struck a chord with this group, no doubt due to the heavy doses of neuroleptics they were on (my opinion, not the article's).

I won't go into my opinion of this article, but just offer it up as further reading material. You can access the article here.

The pitfalls of accepting your diagnosis and telling everyone about it

Gianna Kali has reposted a 2007 opinion piece today by Furious Seasons' Phillip Dawdy where she takes eloquent issue with his opinion that accepting your diagnosis is mandatory on the road to recovery. This idea of accepting your diagnosis is widespread and the thinking is that you are delusional if you do not. Today, many people proudly proclaim that they are their diagnosis. Coincidentally, more and more people have that diagnosis. Wearing your diagnosis goes beyond what the Dawdy piece is saying, but it's a slippery slope. Accepting can become defining.

In mental health, pardon my ignorance, but what exactly is the basis of the diagnosis? There is no test for schizophrenia, no gene, and no drug fixes the problem, so what is it exactly that is being medically diagnosed?

A mental health diagnosis is not a broken leg. A mental health diagnosis is a sliding opinion underpinned by dubious science.

After you've accepted this diagnosis, then what? Will you be open to accepting any label that someone else sticks on you? I could have spent years urging my son to accept his diagnosis, but that would have done more harm than good, in my opinion. In fact, at the beginning my husband and I did urge my son to accept his diagnosis, because this is what the doctors told us Chris must do. In another post I wrote that accepting your diagnosis when you are labeled schizophrenic is akin to a teacher telling you that you are stupid, but if you want to learn you'd better first accept the fact that you're stupid. Any learning you manage to accomplish after that will be the result of an heroic struggle at the expense of your own stupidity.

Robert Whitaker's book has pointed out the pitfalls of becoming your diagnosis: Lifelong patienthood.

If I had it to do all over again, I would never have told a soul that Chris had been given a diagnosis of schizophrenia. I don't know how I would have fudged this the past six years when anyone could see he had a problem, but I was operating under the delusion that there is no stigma in being mentally ill and the first thing to do is to accept your diagnosis. I also felt that if I told people, I could learn things from them that would help. In fact, most people haven't a clue, and I had to do all my own discovery.

It hit home again at lunch today. My friend wanted to know how Chris was doing as she had seen him on one occasion last year when he was on a day pass from the psych hospital. Ian and I had foolishly decided to take him to a special interest group lecture and he spent the time being rather unusual. (Word to the wise. If your relative is out of the psych hospital on a day pass, best stay home.) My friend expressed surprised that (a) Chris actually can read books and (b) that he was able to travel around freely by train. Like most people, she has no clue what a diagnosis of schizophrenia entails, but like most people, she thinks it's lifelong and handicapping. My father went to his grave feeling sorry for the burden that he felt I was going to have to carry the rest of my life. He also had no experience with mental illness beyond what the doctors say about the awful label of schizophrenia. My trying to convince my father otherwise was an exercise in his humoring me. He felt I was putting the best possible polish on a bad situation with my talk of Chris eventually leading a productive, interesting life.

It would be far better to reject the idea of accepting your diagnosis, but be willing to admit, as the Dawdy article puts in a more secondary light, that what you really have is a "problem." That's a diagnosis you can overcome.

Readers may ask, so why is it then that you put schizophrenia front and center in your blog if you reject the label? The answer is so that other people can find their way after they've been handed this label.

Tuesday, July 6, 2010

Would you prefer "small brain volume?"

Robert Whitaker has a blog post today on a research finding* published in the American Journal of Psychiatry.

In this NIMH-funded study, researchers reported that male neonates born to mothers diagnosed and treated for schizophrenia were found to have “several larger than normal brain volumes.” The researchers concluded that this was evidence that “prenatal and early neonatal brain development is abnormal in males at genetic risk for schizophrenia.“

In other words, researchers saw this abnormality as evidence of a “schizophrenic” process already underway in the male neonates. But the mothers diagnosed with schizophrenia in this study were taking antipsychotics, which are known to cause changes in brain volumes. Thus, it may be that the abnormalities seen in the brains of the male neonates were due to the drugs, rather than to any underlying genetic risk for schizophrenia.

The female neonates born to mothers diagnosed with schizophrenia did not have “larger than normal brain volumes,” which of course leads to further doubt about any conclusions that can be drawn from this study.

I am in full agreement with Whitaker's conclusions questioning whether the drugs are responsible for the observed results and why this affects only males and I will go further. It's not a good idea for the results of these kinds of studies to fall into the hands of someone like me. First of all, I'm a parent who has never gone to medical school, and why am I subjected to stupid words like "male neonate" when I guess what we are really talking about here are male babies, not male monkeys. Bullshit factor number 1. It sounds impressive and potentially scares the hell out of your non-medical school graduate. Your psychiatrist will trot this kind of medical vocabulary to keep you in line.

Bullshit factor number 2 to the medically uneducated is the "larger than normal brain volumes." Well, that sounds scary in this context because the research is signaling alarm, but come on, shouldn't larger than normal brain volume be preferable to "smaller than normal brain volume?" Where is the actual problem here? Bigger volume, more room to think and make connections? Right? Who says it's wrong? Bullshit factor number 3 is that the NIMH funded this study. The NIMH is strenuously looking into the magic bullet solution for schizophrenia and other serious mental health problems. It pays lip service to complementary and alternative mental health solutions. Bullshit factor number 4 is that so far, there is no identified gene for schizophrenia, so to my medically uneducated brain, there is no established genetic risk for schizophrenia. If my mother suffered from a mental health problem, no doubt I would have psychological problems myself from interacting with her (see my blog portrait) but don't try to pin genetics on this. Try blaming the environment instead.

Unfortunately, these kind of research findings find their way into the public consciousness and are of no help to anyone actually wanting to recover from their diagnosis.

J. Gilmore. “Prenatal and neonatal brain structure and white matter maturation in children at high risk for schizophrenia.” American Journal of Psychiatry, published in advance online, June 1,2010.

Monday, July 5, 2010

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.

Sunday, July 4, 2010

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.

Friday, July 2, 2010

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.

Thursday, July 1, 2010

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