As long as I remained ignorant, he remained “seriously mentally ill”

Who is this person labelled the “seriously mentally ill?” The Alternative 2010 Conference that was held recently in California brought out a lot of commentary on all sides about this thing called serious mental illness.

My son was accepted by many excellent universities, one of them an Ivy League one. I mention this not to brag, but to make the following point. A scant two years later he would never be the “brilliant” student he once was, according to his doctors. They told me very sadly that he was seriously mentally ill and since he didn’t seem to be getting better, this was sort of it for him. I was to take him home and get used to the idea that his life (and ours) as we knew it was over.

I regret the time wasted not being told the truth about so-called mental illness. I look at Chris now, and I am always amazed at the intellectual calibre of the books he reads and the depth and breadth of his thinking processes. There’s no reason why he can’t excel at any university course he sets his mind to, should he so desire. I regret believing that there was no other option other than for my son to take the drugs we were told he needed to take so that his brain wouldn’t deteriorate any further than it presumably had. I regret that I didn’t know about alternatives. One reason I didn’t know about alternatives is precisely because NAMI, pharma, the psychiatric industry has been pushing the idea of serious mental illness on people like me. That’s their preserve. They exist because they insist that there is this special category of people.

Gradually it began to dimly dawn on me that maybe my husband and I had something to do with the state of mind my son was in. It should be at least part of the story, shouldn’t it? Surely there was something we could do or think that would help? Not when the mental health industry juggernaut gets involved. That kind of thinking is considered heresy and needs to be stamped out at every possible opportunity.

Chris remained seriously mentally ill while he was under the care of the psychiatric system and until I started to doubt the system. The psychiatrists we dealt supposedly believed in what they did, but obviously what they did was a failure. They didn’t admit to this. They turned thumbs down on my suggestions. They claimed that these are special cases who need their “help.” I don’t know what Dr. X was doing about serious mental illness, because whatever he was doing (the drugs, the therapy) wasn’t working. How could he possibly claim any legitimacy in this area and that he knew something that we didn’t? When Ian and I finally were forced to go behind his back to get Chris down to 25 mgs of clozapine, Dr. X. pleaded with us not to take it any lower because lower doses weren’t even therapeutic! I didn’t see anything therapetic happening at the higher doses or in the day program Chris attended, but this must somehow have escaped Dr. X, whose paycheck relied on the existence of serious mental illness.

They try to protect the “seriously mentally ill” through denying them their right to have their own voice, be it through medications or lowered expectations. Those who believe in the “seriously mentally ill” can’t seem to grasp that having the “seriously mentally ill” exist is a colossal failure of the parts of those who claim to be doing something about it. It is an indictment of medications, genetic links, psychiatry as practiced most everywhere today, and history. Thinking that there is something called serious mental illness says that people aren’t connecting cause with effect. Chances are when pressed, that people who do the labelling believe that there is bad brain biochemistry rather than bad environments.

I don’t believe in “the seriously mentally ill” but I do believe that they will continue to exist as long as the real problems of the so called seriously mentally ill go unnoticed by those who claim they are treating them. “Seriously mentally ill” was something that went away after I began pursuing serious understanding of what Chris was going through and why.

Rolfing

Many, if not most of the therapies that I write about on this blog, such as sound therapy and Tomatis, are not known in treating schizophrenia or other mental health issues. They are just therapies that I thought had a thread of logic regarding possible good outcomes for Chris, so I went for them. I’m glad that I did. All of the therapies that I write about in this blog have moved Chris forward in some way.

Today’s New York Times has an article about Rolfing, that New-Age seventies thing that was the butt of many jokes at the time. Rolfing is painful and can open up a flood of emotional memories, therefore, if introduced at all it might be good to wait until your relative is further along in the healing process.

As with other holistic practices, Rolfing seems to leave the door open for a certain mysticism. Even those who have little use for New Age-type practices like meditation can verge on the metaphysical when discussing Rolfing.

I don’t normally recommend things on my blog that I haven’t personally experienced, however, there are times when I do. There is a wide array of holistic products and practices that can help. Access to an Assemblage Point shift is out of the question for many due to the fact that there are so few practitioners. Tomatis is relatively expensive. There is no one pathway to healing, and I don’t want readers to get stuck in thinking that there is. As long as there is there appears to be no harm from the treatment, then what do we have to lose?

Random thoughts

Sometimes I tire of all the extremism in mental health. The doctors are one thing, some of the victims/patients/survivors are something else. It can be very hard to learn and progress with all the black and white thinking going on.

Daniel Paul Schreber’s wife. Now there was someone who sided with the doctor against her husband. Daniel Paul Schreber was the author of the wonderful “Memoirs of My Nervous Illness.”   In his second hospitalization (1893 – 1902) he came under the care of Dr. Fleschig. His wife kept a framed photograph of Dr. Fleschig on her desk.

Today is World Mental Health Day. What are you doing about it? Here’s my suggestion. Send a letter or an e-mail to the editor of your local paper denouncing the widespread use and misuse of medications in treating patients. Say something nice about alternatives.

Politically incorrect psychiatry

From http://www.psychquotes.com/

“Every child in America entering school at the age of five is insane because he comes to school with certain allegiances to our founding fathers, toward our elected officials, toward his parents, toward a belief in a supernatural being, and toward the sovereignty of this nation as a separate entity. It’s up to you as teachers to make all these sick children well – by creating the international child of the future”
(Dr. Chester M. Pierce, Psychiatrist, address to the Childhood International Education Seminar, 1973)

“We have swallowed all manner of poisonous certainties fed us by our parents, our Sunday and day school teachers, our politicians, our priests, our newspapers, and others with a vested interest in controlling us. ‘Thou shalt become as gods, knowing good and evil,’ good and evil with which to keep children under control, with which to impose local and familial and national loyalties and with which to blind children to their glorious intellectual heritage… The results, the inevitable results, are frustration, inferiority, neurosis and inability to enjoy living, to reason clearly or to make a world fit to live in.”
(Dr. G. Brock Chisholm, President, World Federation of Mental Health and first Director General of the World Health Organization)

“…Jesus Christ might simply have returned to his carpentry following the use of modern psychiatric treatments.”
(William Sargant, British psychiatrist, 1974)

Misery loves company

Several years ago I joined an on-line schizophrenia support group. I was beginning to change my ideas about the diagnosis and I joined the group to meet people in a similar situation. We live in a European city where we are not fluent in the local language and this has limited our reaching out. The only people I knew going through what Chris and I were going through were part of the bi-weekly support group run by the hospital program that Chris attended. Since I was not fluent in the language, contact with other parents was virtually non-existent.

I stayed with the on-line support group for about two years. It ultimately served to harden my holistic position. The regulars in the group were wonderful people struggling daily to cope with what they saw primarily as a disease needing medication. I quickly began to feel quite out of place. The members defined themselves by their diagnosis. They lectured each other on the need to keep on the medication and did not agree with the few people who suggested that there might be another way. It was heartbreaking to see where the medication had brought many of them.

There was one young woman who was approaching her thirtieth birthday. She lived by herself in a rural area. Her father stopped by from time to time to do repairs, but for most of the time she was alone, and this was not a good thing. It pitched her further into psychosis which broke through every so often in the messages she wrote. Her loneliness was overwhelming. She was on so many high dose psych meds it made my head spin. Who enabled her to get to this position? She saw a psychiatrist once a month, but only for a med check. This young woman was very articulate, even through the meds fog. On occasions when she lapsed into psychosis, the group’s verdict was to urge her to change or increase her meds. If she was clearly psychotic while on meds, shouldn’t it dawn on the members that the meds might be the problem here?

The overuse of meds seemed to be a problem mainly in the United States where so many factors collude in giving people lots and lots of pills and little access to psychotherapy. It was mind boggling to see how badly off these people really were. Multiple pills, multiple diagnoses. Nobody seemed to question whether they truly were all of the labels. “I’m schizoaffective and OCD, with depressive features.” No, you’re not, I am thinking. You merely have problems that have not been properly addressed.

I began to feel badly for even opening my mouth about an alternative view. Why? Simply because many of the members were my age and at this advanced age, reminding people of what might have been seemed downright cruel. They clung to their diagnoses because to do otherwise might open up regret. The type of people that were in the group tended to be ones who drew comfort from feeling bad. “My brother jumped off a building in the 1970s, said one member, “and he’s been in a wheel chair ever since! That’s the reality of untreated schizophrenia, don’t you get it? Don’t talk to me about getting off the drugs!”

I left the group, not wanting to feel bad about a situation I knew I could do something about.

Report card

Chris is doing well. Ian and I stick to our vow to not discuss Chris under almost any circumstance (the low Expressed Emotion thing). Chris has enrolled for another night course in computer technology, having finished the two week intro while Ian and I were away in August. He was asked, and forced to turn down, a request to join a rock band because unfortunately it interferes with his night course. He continues his once a week voice lessons and sings in the church choir.

He sees the sound shaman once a week. The shaman, in addition to working his magic on Chris’s chakras through sound, has suggested to Chris that he might want to put some of his energy into finding a girlfriend. Can a girlfriend come before a paycheck? We’ll see. If he does find a girlfriend, she might be attracted by his cooking skills. He’s becoming quite good at feeding the family on a nightly basis and he does a lot of the grocery shopping.

Chris continues to whittle away at the medication while seeing Dr. Stern twice a week. For those who are new to this blog, a large part of my energy was spent in the beginning fighting to get him off the medication. After being off the meds for a few months, he relapsed, although not due to the withdrawal. He went back into the hospital and was put on meds once again, most unfortunately. I argued again with the doctors to get him off them. Chris is now in the process of handling his own medication withdrawal. I noticed the other day that he seems more at ease with people, although, he still tends to stand while others are sitting, making it slightly socially awkward. I expect that to dissipate over time, but I do not feel it is meds-related.

He’s thinking hard about where he wants to go in life. There are a few open houses coming up with programs that he might want to pursue. I hope he goes to them.

Chris has also started to complain that he feels that all he does is errands for us. Good. I hope he is waking up to the idea of striking out on his own, becoming his own person, ditching the ties that bind.

P.S. I forgot to mention the vitamins, as Duane noted in the comments to this post. We have a more relaxed attitude toward the vitamins than previously. Chris is no longer taking 35 vitamins a day. That was becoming a bit of a tyranny. (See: The tyranny of vitamins). Instead, he has scaled down to the Dr. Hoffer basics – NADH instead of niacin, vitamin C, a vitamin B, and recently he has started taking 4 omega 3s per day.

What version of coming off meds did Will Hall sign off on?

I was going to write an update today on how well Chris is doing. Instead, after reading a postscript to the Huffington Post article by DJ Jaffe, I realized that Chris couldn’t possibly be doing well.

Jaffe is highly critical of the  Alternatives 2010 Mental Health Conference, which took place Sept. 29 – Oct. 3 in Anaheim, CA.  Jaffe is not a  psychiatrist, but rather an opinion leader from the patient ranks. Jaffe is obviously a friend of state mind control, while maintaining he is a advocate for the mentally ill, so in that respect, people may confuse him with being a psychiatrist. He is no friend of the mentally ill because the opinion piece he wrote on the Alternatives Conference is a put down of human beings every step of the way in the best best tradition of institutional psychiatry. In a follow-up article today in the HP, Jaffe doesn’t seem to get that so-called mentally ill people are exactly like you and me, and that’s appalling, coming from someone who purports to want to help. He wants to lock’em up in a police state run by relatives in collusion with the police. He doesn’t seem to get it at all.

This guy is a do-gooder by appearance but he has aligned himself with interests that are the opposite of empathetic. There are many like him out there. They are not on the side of the sufferer because they continue to deny that the labelled person has any mind of their own or any rightous reason to behave as they do. They continue to believe that there is something called serious mental illness, because not believing in it might turn the spotlight on their own biases towards the individual. They use the language of dependency. The mentally ill can’t possibly know what is good for them, so we must protect them at all costs. According to Jaffe’s bio, he’s been advocating for the “seriously” mentally ill for over thirty years now. He only takes an anti-depressant. He’s done a good job in advocating in favor of the seriously mentally ill because we still have lots of seriously mentally ill folks whose relatives like Jaffe’s views.

Jaffe was very critical of Will Hall’s workshop of coming off psychiatric meds. The organizers of the Conference wanted Hall to downplay the coming off psych meds. From my understanding, Hall refused to change the wording and that in effect cancelled the workshop. The organizers then backed down, and Hall agreed to deliver the workshop.

First, I looked up Will Hall’s presentation – Coming Off Medications: A Harm Reduction Approach

Here’s what I read today (Oct. 6) on the Internet:

Participants will learn what a harm reduction approach is, receive a copy of the Harm Reduction Guide, understand the goals of medication empowerment, and explore how to collaborate in a partnership with prescribing professionals. This workshop is not medical advice but is about educating participants to be more empowered and make wiser, more confident choices about mental health treatments including starting, continuing, reducing, changing, and going off medications.

If this was the wording that Will Hall signed off on, then that’s exactly what I would want to see written.

Jaffe reports an updated description of the workshop which I reprinted below. If this is in fact what Will Hall agreed to, I am (a) very disapointed, to say the least, and (b) plenty discouraged today about Chris’s prospects because apparently Chris is seriously mentally ill, a schizophrenic who needs his medications to prevent him from deteriorating. (I thought it was my job to help prevent the deterioration.)  As a labelled schizophrenic he has been singled out from the rest of the mentally ill people attending the conference as the worst of the worst. Other people who are not as well informed as you and me are going to take this advice at face value. Once a schizophrenic, always a schizophrenic is the message I get from this. Don’t ever separate these seriously whacko people from their medications or tragedy will always result. My job as a supportive parent who believes in her son’s innate wisdom and mental health and accepts my own share of the responsibility has just been delivered a devastating blow. So has your job.

Jaffe’s update on Oct. 2nd on what we are led to believe is the revised description of Will Hall’s workshop :

Updated 10/2/2010: The following section was inserted: “For the ‘labeled’ participants, there will be a workshop on how to go off medications. That could be a dangerous, if not deadly, ‘alternative,’ should someone with schizophrenia who needs medication to prevent them from deteriorating decides to do it”.

It replaces a section which previously read, “For the ‘labeled’ participants, there will be a workshop on how to go off medications. That could be a dangerous, if not deadly, ‘alternative,’ should any people with real mental illness be in attendance.

Jaffe’s description sounds like it might have been taken from document not related to the Conference agenda, e.g. “there will be a workshop.” Did Will Hall agree to deliver the workshop as described in the Jaffe update? Please, someone, tell me no.

When pharma was fine

I used to work for pharma. It was only a summer line job at the pharmaceutical firm where my father worked, but it was in pharma. Back in the 1970s, the firm was the biggest employer in the county. Actually, it was just about the only employer in the area that paid decent wages. Those unionized paychecks went a long way to covering my living expenses through four years of university. Almost everybody we knew worked at the company in the company town – my friends’ parents, my parents’ friends. Pharmaceuticals were king. People liked pharma. One of the firm’s big sellers was a hormone replacement drug that mother and her friends all swore by. In their opinion, it was even better than Tupperware. (I only remember one of my mother’s friends developing breast cancer.) There was this unbridled post-war belief that advances in technology and pharmacology was only going to make our lives better and better.

I worked on the production line, wearing a hairnet, white coat and sensible shoes. The job involved either inspecting pills or sterilizing bottles on a daily basis. Here’s a picture of how to load the hopper. I like routine jobs. You know what to expect.

Despite the fact that my father worked at the company and was a believer (and a shareholder), he also became a fervent fan of vitamins. When he was in his mid-fifties he developed a circulation problem in his leg, possibly due to years of smoking. He quit smoking cold turkey. My mother had been reading about vitamin E. They made a pilgrimage to the Shute brothers clinic in London, Ontario to learn about the benefits of this wonder drug. Eight hundred international units of vitamin E along with other daily vitamins improved my father’s health significantly. He felt great. He told others. Did my parents check with the family doctor about whether they should do this? They did not. The family doctor, it was felt by many in the town, was a pill pusher. I haven’t heard that expression for a while.

The example set by my parents is how attitudes are developed about one’s own future health concerns. My parents believed that the daily intake of vitamins allowed them to flourish well into their eighties.

This was the era of the television show Laugh-In and the Farkle Family sketches, where a lot of the fun focused around the double sounding alliteration of the letters F and PH. The president of the pharmaceutical company in our town was an unassuming little man named Franklin F. One of my high school friends who also worked on the line had us all in stitches when she came up with the expression “Fine pharmaceutical firm you have here, Frank.” That’s how everybody in that country and in that era felt about it, too. Pharma was fantastically fine back then.