Ian and I discussed Chris today. It went like this:
Ian: Where was Chris last night?
Me: He was at his course.
Ian: What course was that?
Me: A computer technician course. He took the intro in August.
Ian: Good.
END OF DISCUSSION.
Holistic Recovery from Schizophrenia: A Mother and Son Journey
Ian and I discussed Chris today. It went like this:
Ian: Where was Chris last night?
Me: He was at his course.
Ian: What course was that?
Me: A computer technician course. He took the intro in August.
Ian: Good.
END OF DISCUSSION.
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)
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.
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.
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.
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.
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.
My husband and I met in a course about the economic effects of government regulation, so it has been a subject near and dear to our hearts. We learned about regulatory capture, or “producer protection” as our economics professor termed it. Every year our professor reread Gabriel Kolko’s book Railroads and Regulation to refresh his thoughts on this matter. Kolko, who taught at our university, was a socialist. Our professor was a Milton Friedmanite, yet he and Kolko found common ground in the evidence that producers act in their own best interests by aligning themselves with government regulators. It’s not such a stretch for the public to understand the motivation, particularly when it comes to railway barons. What is hard for us to swallow is that government agencies have willingly allowed themselves to be captured when it comes to regulatory approval of drugs. See my previous blog post on the FDA and Merck.
Government regulation of railways, according to Kolko, was exactly what the railways wanted. I am reminded of the Uncle Remus story where Brer Rabbit pleads repeatedly with Brer Fox that he can kill him, thrash him, do whatever, but please, please, please do not to throw him in the pawpaw patch. Naturally, Brer Fox is tricked by thinking that doing what Brer Rabbit is pleading not to do will really “fix” him. He throws him in. Brer Rabbit reminds Brer Fox as he scampers away that he was born and bred in the pawpaw patch and the pawpaw patch is exactly where he wanted to be.
More about regulatory capture below and at Wikipedia.
Regulatory capture occurs when a state regulatory agency created to act in the public interest instead acts in favor of the commercial or special interests that dominate in the industry or sector it is charged with regulating. Regulatory capture is a form of government failure, as it can act as an encouragement for large firms to produce negative externalities. The agencies are called Captured Agencies.
For public choice theorists, regulatory capture occurs because groups or individuals with a high-stakes interest in the outcome of policy or regulatory decisions can be expected to focus their resources and energies in attempting to gain the policy outcomes they prefer, while members of the public, each with only a tiny individual stake in the outcome, will ignore it altogether. Regulatory capture refers to when this imbalance of focused resources devoted to a particular policy outcome is successful at “capturing” influence with the staff or commission members of the regulatory agency, so that the preferred policy outcomes of the special interest are implemented.
Regulatory capture theory is a core focus of the branch of public choice referred to as the economics of regulation; economists in this specialty are critical of conceptualizations of governmental regulatory intervention as being motivated to protect public good. Often cited articles include Bernstein (1955), Huntington (1952), Laffont & Tirole (1991), and Levine & Forrence (1990). The theory of regulatory capture is associated with Nobel laureate economist George Stigler, one of its main developers.
The risk of regulatory capture suggests that regulatory agencies should be protected from outside influence as much as possible, or else not created at all. A captured regulatory agency that serves the interests of its invested patrons with the power of the government behind it is often worse than no regulation whatsoever.
I began writing about Chris’s and my experience in mental health care five years ago when it suddenly clicked with me that a diagnosis of schizophrenia was the beginning of a fabulous journey, although not one without peril. It occurred to me to write a book to sound the drum for an alternative way of thinking about an up-until-now dismal diagnosis. Five years later and I am still at it. Seventy-five thousand words but just about done.
What I’ve written is sort of a do-it-yourself look at alternative mental health but in the form of a memoir. It can also be seen as a coming of age story regarding waking up to the delusion of the pharmaceutical cure. My book has been professionally edited three times. I realized early on that my writing skills were rusty from being on the mommy track for so long (grocery lists and notes to teacher). It was just about ready two years ago and then Chris had a relapse. Being a holistic convert, I took it in stride as a necessary step on the road to self-awareness on both our counts. The relapse also allowed me to add some interesting new chapters on yet more therapies and approaches.
Most of the therapies that I have written about in my book are not known to be applied to a diagnosis of schizophrenia. That’s part of why what Chris and I are doing is so interesting. It’s all new territory. I also personally underwent these novel therapies so that I could get a better grip on what I was writing about. I, too, have benefited from the healing effects of the therapies.
I am at the point where I could really use some advice about how to market this book. I am perfectly prepared to go the self-publishing route because it involves no rejection letters and not as much work as chasing agents. (I have already received a few rejection letters, so I feel I must be getting closer to a published book). I can also put it on Authonomy, the author’s website where other writer’s critique your work in exchange for your critiquing theirs. My book would be available to anyone who simply signs up for an account. What I want to do is to get our story to a larger public. I’ve gone the blog and Twitter route as a way of getting a strong “platform” as they say in the biz but also as a way of sharpening my writing skills. I don’t know how strong my platform really is, but it looks good in a query letter.
If you have any ideas that I may not have considered, please feel free to contact me about them. No idea is too small, too big or too eccentric, trust me.
Kristin at Borderline Families has leveled a well-aimed broadside taking issue with an article by Craig Garner appearing in the Huffington Post. You can read her blog post here. Having read the Garner piece, I find myself agreeing with Kristin’s point that Mr. Garner is supporting the psychiatric industry by trotting out the usual uninformed views of mental illness (he should know better) such as when he writes “that the family experiences fear after a loved one is diagnosed with “mental illness”. He guesses that “this is because they are wondering if they are susceptible to the “illness” as well.”
Kristin saying that the thought never entered her head that she would somehow “catch” the illness was exactly my reaction at the time, but unfortunately this is the clichéd question that every Frequently Asked Question about mental health poses. Haven’t we moved beyond this simplistic idea? Obviously not, judging from what Mr. Garner wrote . My reaction at the time was that reassuring Chris’s brothers that they weren’t going to catch this would have the opposite effect. “Oh, no. This is obviously a possibility or why else would she bring this up!” Like Kristin, my fear was for my son as I watched him clearly not get better on the drugs that every doctor we came into contact with claimed would make him better.
The part of her post that I can really identify with is her experience with the Menninger Clinic. Our experience was with CAMH in Toronto, but it really doesn’t matter where you go for help because the professionals who are supposedly providing the help haven’t a clue about mental illness or what they are going to do about it. Nonetheless, we are expected to trust their superior knowledge. Yes, I would characterize their contagious “I’m so sorry attitude,” as handwringing.
The inability of The Menninger Clinic to explain their philosophy for treatment was dumbfounding. It was as if they created this layered confused recital so that we thought that they were so damn intelligent that we would defer without question. Did they want us to believe that their program was so developed and intricate that the layperson was unable to grasp the concepts?
For two days staff members stood before us wringing their hands commiserating over our difficult situations. Then each commenced on a well rehearsed speech describing various aspects of their treatment philosophy. The specialized language and convoluted blather left most couples writing notes to one another or sitting on the edge of the plastic seats, trying to stay warm and attentive. I wondered whether their techniques were so cutting edge that it was hard to nail down the complexities or was it simply that the thesis had been lost in psychobabble. I think that the reputation of The Menninger Clinic was a towering house of cards. If we all exhaled at the same time, it would have crumbled.
It would have been far better for Chris and our family if we weren’t greeted at CAMH like we were entering a funeral home. Some honesty would have gone a long way, too. “Gee, your son needs some help in going through a crisis. It may be related to his interactions with the family environment when he was growing up, or he may just need nutritional support or a combination of several approaches. We can give him a drug for a short period of time, but the drugs have side effects. The best thing for you to do is to take the perspective that it is a crisis that will pass, with proper psychological support for him and for you. He’s not going to get better overnight, and it may take him a few years to get back on his feet, but recover he will and he may even surpass all previous expectations. Chances are he’ll recover quicker if you learn how to engage him.
Unfortunately, the stereotype of mental illness is perpetuated by handwringing professionals who act like funeral home directors. That part is definitely contagious.
I have yet to write about yoga on this blog, and I realized driving home today that this was going to change. Practicing yoga should be part of everybody’s holistic lifestyle.
When Ian and I were in the depths of our despair over Chris a few years ago, we signed up for a yoga class one night a week after work. This is the first hobby (can yoga be considered a hobby?) we have actually done together in all our years of marriage. I like going to flea markets on Saturdays, Ian prefers to have a massage. Ian likes working on week-ends. I find other ways to amuse myself. We used to take our sons camping when they were little, but that doesn’t count because it was a family activity, like going to church.
So, here we were in our mid fifties, starting out in yoga. It seemed that everybody else in the class had been doing yoga for years. But we persevered and grew to love it. It’s been three years.
At the same time as the yoga, we began to dabble in meditation, just a night here and there with a group. Occasionally during both the yoga and the meditation classes, silent tears would stream down my cheeks. I was letting the sadness and the tension go.
I haven’t cried for a long time in either of these classes. Something happened. I felt stronger, more at peace and I grew to understand that there was really no need to cry because what both Chris and I were going through was a spiritual transformation. The tears were important for me in letting go of old habits and attitudes.