In line with a previous post on how the disorienting experience of schizophrenia can sharpen the intellect there is a recent article in the New York Times that reinforces this message.

Jack Mezirow, a professor emeritus at Columbia Teachers College, has proposed that adults learn best if presented with what he calls a “disorienting dilemma,” or something that “helps you critically reflect on the assumptions you’ve acquired.”

This article advises the aging brain to do anything from learning a foreign language to taking a different route to work.. . Continued brain development and a richer form of learning may require that you “bump up against people and ideas” that are different.

When you are confronted with what others all around you are calling a tragedy, the kind of experience that shakes up your world, rather than retreat within your normal defense mechanisms, this is the time to rise above it, to learn from it and to find something inspiring in it. By doing so, you just may be helping your brain to stay fit.

The hypocrisy of my New Year’s resolution to write fewer, but better blogs has been pointed out to me by faithful reader Sister Jane Findlay. She has noted that I haven’t missed a day, but thankfully judges that the quality of the writing isn’t suffering. Trust a nun to know when good intentions have been cast aside. I will amend my New Year’s resolution slightly, to not necessarily posting every day.

Which brings me to the latest article from the New York Times. The Americanization of Mental Illness explains many things about mental illness and schizophrenia through the lens of culture. If you are like me, totally confused about what schizophrenia is, suspicious of the disease label that has been affixed to it and wondering why people with schizophrenia in poorer countries have better outcomes, this article is for you.

EVEN WHEN THE underlying science is sound and the intentions altruistic, the export of Western biomedical ideas can have frustrating and unexpected consequences. For the last 50-odd years, Western mental-health professionals have been pushing what they call “mental-health literacy” on the rest of the world. Cultures became more “literate” as they adopted Western biomedical conceptions of diseases like depression and schizophrenia. One study published in The International Journal of Mental Health, for instance, portrayed those who endorsed the statement that “mental illness is an illness like any other” as having a “knowledgeable, benevolent, supportive orientation toward the mentally ill.”
….
Mental illnesses, it was suggested, should be treated like “brain diseases” over which the patient has little choice or responsibility. This was promoted both as a scientific fact and as a social narrative that would reap great benefits. The logic seemed unassailable: Once people believed that the onset of mental illnesses did not spring from supernatural forces, character flaws, semen loss or some other prescientific notion, the sufferer would be protected from blame and stigma. This idea has been promoted by mental-health providers, drug companies and patient-advocacy groups like the National Alliance for the Mentally Ill in the United States and SANE in Britain. In a sometimes fractious field, everyone seemed to agree that this modern way of thinking about mental illness would reduce the social isolation and stigma often experienced by those with mental illness. Trampling on indigenous prescientific superstitions about the cause of mental illness seemed a small price to pay to relieve some of the social suffering of the mentally ill.

But does the “brain disease” belief actually reduce stigma?

The results of the current study suggest that we may actually treat people more harshly when their problem is described in disease terms,” Mehta wrote. “We say we are being kind, but our actions suggest otherwise.” The problem, it appears, is that the biomedical narrative about an illness like schizophrenia carries with it the subtle assumption that a brain made ill through biomedical or genetic abnormalities is more thoroughly broken and permanently abnormal than one made ill though life events. “Viewing those with mental disorders as diseased sets them apart and may lead to our perceiving them as physically distinct. Biochemical aberrations make them almost a different species.”

In other words, the belief that was assumed to decrease stigma actually increased it.

I have always wondered why on earth people are so eager to accept the diagnosis that they or their relative has a deficient brain. It’s amazing what people will allow their doctors to tell them that reflect poorly on them and give them no hope whatsoever to do anything about it. On the other hand, I have fallen into the peculiarly American trap this article explains, of high EE, or expressed emotion. I had heard about high EE families, and that people who have better outcomes with schizophrenia have low EE environments, but nobody has ever explained in a practical sense, as this article does, why being overly protective and prodding a relative to get through their problems through sheer willpower just doesn’t work very well. So, I fell into a different kind of trap. Instead of thinking that Chris had a defective brain, which I know isn’t the case, I fell into the trap of caring too much that he didn’t. This “can do” attitude doesn’t work very well as an incentive in schizophrenia.

Here’s a tip for parents. Through trial and error, I discovered that the more I pretended not to notice Chris’s, um, peculiarities, the less peculiar he became. I did read about that early on. It grates me that I had to pick it up by sniffing out and seizing on one sentence that I found in some obscure article I read. You won’t find this useful nugget in the the so-called authoritative books on schizophrenia. Some doctor noticed that patients who had better outcomes, often had parents who barely noticed there was a problem. In my defence, maybe I had to became an EE parent to counteract the medical dogma being foisted on me and Chris by the diseased brain practitioners peddling their drugs. They still are not over-exposed to that model in Africa, thank goodness, where EE is very low.

I am still puzzling over why a website for x-ray technician schools has information on schizophrenia, however, I’m glad it does. The information on this X-Ray Vision-aries Blog (link no longer available) is much more encouraging than what is normally found elsewhere.

Here’s a sample, below. Note that the article doesn’t push medications as a cure-all, and it acknowledges that there is no universal cure but there are individual ones.

“By learning how to take control of their illness, schizophrenics may very well end up leading happy, productive lives once the proper blend of therapy and/or medication has been established. Upon the establishment of a gratifying, personalized method of treatment, the risk of a relapse drops significantly. Roughly half to 2/3 of schizophrenics undergoing a psychotherapeutic regimen that meets their needs improve significantly – if not outright recover. The psychological community defines recovery from schizophrenia as a complete sloughing off of the disorder’s symptoms. Patients function and integrate themselves in a healthy manner without the aid of therapy and medication. While no universal cure for schizophrenia exists, individual ones do – and when they are discovered they mean bringing the victim out of their encroaching darkness and back into a satisfying and stable life.

Unfortunately, due to overarching stigmas falsely regarding psychotherapy as the exclusive realm of the crazy, the misanthropic, and the living damned, many individuals suffering from schizophrenia and other mental illnesses shy away from pursuing it.”

http://www.x-raytechnicianschools.org/10-myths-about-schizophrenia/

I recommend the following article Open Dialog — Alternative for Psychosis in Scandinavia and Finland on the bipolarblast website, You can read the article here

To quote the article’s author, madnessradio, the open dialogue approach “challenges a key problem with holistic health approaches, which, though they avoid the harm of pharmaceuticals, remain individualistic and tend to ignore social context and immediate relationships as pathways to recovery, remaining in the ’something is wrong with you” framework shared with the disease model.”

Madnessradio continues: “In the open dialog session video we watched, I was struck that they chose to show a clinical moment where a change in attitude in a therapist, not the client, was the key to improving the situation. This strikes me as revolutionary in outlook – the problem is in the network of relationships surrounding a person who is “in crisis.”

Well, perhaps easier said than done, as Barack Obama is finding out with the war on terrorism.

Yes, the shared problem, a.k.a. “blame” approach may soon be revolutionary once more, but will need sensitive handling so that parents don’t walk. Open Dialog should consider dropping the Marxist references to abusers, a.k.a. the family. Labelling the family as “abusers” will kill any dialog before it opens. How about, instead, using the language of compassion? From what I read in this article, perhaps the needed change in attitude may simply be for the family and the therapist to stop thinking the patient is whacko and instead might actually be making skewed sense. My kind of holistic schizophrenia involves attitude adjustment on the part of the family members and therapists alike. For the past several decades parents have been told that their child has a biochemical imbalance. The so-called biochemical imbalance may be a biological coping mechanism to a perception of the world that is different than the norm. And who of the rest of us is normal?

1. Spend more time crafting my blog posts. I will be posting less frequently, but with more polished content. “Less is more.”

2. Finish my book.

3. Promote my chapter. Goddess Shift: Women Leading for a Change is due out in May 2010. Read about it here.

4. Get a decent website.

5. Continue to nurture Chris along his path.

6. Keep at the yoga.

In my life, the person of the year is Dr. Maria Stern, Chris’s psychiatrist. She has done a lot, not just for Chris but for Ian and me. It’s easy for me to see the flaws in psychiatrists, psychiatry and the medical community in general but then there are the exceptional psychiatrists like Dr. Stern, who manage to balance the interests of the client and the parents alongside their own belief system and training.

Dr. Stern is very supportive of our difficulties, and offers positive encouragement when occasionally I get a little down. I’m sure there are many times when Dr. Stern would love to tell Ian and me exactly what we are doing wrong and how foolish we sometimes seem in her eyes, but she doesn’t. She is diplomatic and skillful. She always thanks us for our observations and usually says that she has noticed exactly the same thing. When I signal to her that there is an area where I think Chris can improve, she takes it to heart. The next thing you know he has improved in that area and there’s no longer an issue. I plan to make greater use of her gifts in this way.

Thank you Dr. Stern for working wonders.

Recently I have been mulling over why parents need to be very involved in helping their adult children overcome the crisis of schizophrenia. There are so many reasons why it is harder to help an adult than a young child but these are excuses. The most often cited reason parents give is that the person won’t accept help. Depending on how you feel about it, you can either respect the choices of the person undergoing the crisis to allow him to remain in the crisis without active intervention on your part or you can believe that it is the parental duty to take over when that person is not able enough to make wise choices. Speaking as a parent, I favor the interventionist approach.

As parents, by having children we signed up to lifelong commitment of caring, which doesn’t end magically at the ages of 18 or 21. We are still the adults here, to help guide our children through young adulthood, which these days seems to last well into the third decade for a lot of people and much longer for some.

Choosing to be an interferring parent is tough but it is far easier than being a helpless bystander as the years go by. It means that most likely you will have your adult relative living at home with you as the only way to exercise some degree of control over the situation and to demonstrate by actions not words that he is she is secure under your roof. Adult children living with their parents doesn’t go down well in certain Anglo-Saxon cultures, paving the way for life on the street and a reduced chance to ever get well. Hands-on parenting means that sometimes you have to be in the bully pulpit, sometimes on the side of forcing meds compliance and/or sometimes forcing a vitamin regime or other interventions that you feel would be beneficial. Then there is the social responsibility of the parent to not allow their adult family member to victimize the wider public and at the same time to protect him or her from becoming a victim. Your child is no one else’s responsbility but your own when it comes to protecting others. If you can avoid an unfortunate social outcome without resorting to meds, great, if not, insist that meds be used sparingly. If you are a parent who sees medication as the final answer, then you are not doing justice to your relative.

My job was made easier by becoming an informed interferring parent while still preparing for the day for Chris to assume control. This inevitably led to a clash with the medical profession over the use of the medication and the role of therapy. Just because the medical profession is stuck in an outdated paradigm when it comes to schizophrenia doesn’t mean a parent has to be. And, when the doctor who is treating us has had schizophrenia him/herself, then we’ll talk. Until then, parents and child are the real experts. What the doctor brings to the table can be useful, but it is also imperfect. Always keep in mind doctors’ claims that people with schizophrenia who get well often aren’t good patients and that they have a supportive family.

In my personal experience I spent several wasted years wallowing in the misery factor. We owe it to our relative to become relentlessly optimistic and cheerful in the face of obstacles, which are many. There is no point feeling sorry for ourselves and them. Being sad doesn’t help your relative see a positive way out. It sends off all the wrong messages. You will never get out of this, for one. You are damaged, for another. “I” prefer being miserable to “your” getting better is another one.

What the medical profession hasn’t done is to reveal to its clients that well-known “secret” that the crisis of schizophrenia is an understandable human condition, and that’s a problem. If more people were exposed to the idea that schizophrenia is an understandable, albeit somewhat unusual reaction to life’s pain, it would make the task of helping your relative through it so much easier. There are psychiatrists who have been saying this for years, but their message has been stifled by the greater number of medical professionals and researchers who are funded directly or indirectly by the pharmaceutical industry. Parents should be positively reinforced by medical authority figures when their own strength begins to wobble, not gently dissuaded of the foolhardiness of their beliefs.

As a mother I felt quite hopeless in the face of grim doctors telling me that my son has a lifelong brain disease. Nothing can be further from the truth, but I had to find that out for myself while the medical profession continued to enrich itself pursuing research grants from pharmaceutical companies rather than bringing Jung to the table and illuminating others. It has turned its back by and large on helping parents like me believe in ourselves and in our children, that we have something to offer.

Once you begin to understand what your relative is going through it is a journey, not an ending.

I would like to take this opportunity to thank the people who contributed comments to my blog since it began in April of this year. Thank you, all of you, who have felt moved enough to write. I appreciate your support, even your criticism, and I trust that other readers have also benefited from the wisdom of your experience.

Last year at this time Chris was psychotic and Christmas was hell. (See Christmas was hell (July 2009)). While it isn’t an experience I want to go through again, I’ll tell you why it also wasn’t the end of the world. Contrary to what I had been led to believe, Chris did not suffer brain damage and he has not been irreparably marred by the experience of his subsquently spending another three months in hospital, bringing him up to a total of nine months in hospital over the past six years. Rather, we used the experience of psychosis and hospitalization to ask ourselves what we could learn and how we can avoid a repetition of these events.

I had been led to expect by the “experts” (official websites) that someone who is undergoing repeat psychosis and hospitalizations is getting further and further away from recovery. Could it be that this viewpoint is simply wrong? Could it be that this view is promulgated by pharmaceutical companies to keep people on their meds? Protecting the brain and all. It would be lovely to think that someone who suffers one psychotic breakdown is suddenly going to figure it out and do what ever needs to be done to avoid a repeat performance. It’s not reality, though. Clinging to the notion that relapses are to be avoided at any cost puts an enormous and sad burden on the family: that if a relapse does occur there is the nagging fear that their relative is burning out, getting stupider, will never amount to anything, will never hold a job, etc. The misery of letting the official viewpoint guide your thinking is grinding.

While it is true that Chris has lost a year of the kind of productivity I would like to see (university, meaningful work), he has gained a lot in terms of insight and resiliency. He is back in the church choir, has done a couple of solos, has resumed his voice lessons, volunteers at the soup kitchen, and travels widely and independently. He is getting along well with his brothers, making this Christmas extra special.

Something sinister is afoot with the proliferation of add-on psychiatric drugs to treat non-psychiatric conditions. This one below is particularly strange and scary as it combines an anti-depressant with an anti-convulsant. Don’t want to go there.

Caveat emptor.

W W W . A L U M N I R E V I E W . Q U E E N S U . C A 17

When two drugs are better than one

People who suffer from debilitating neuropathic pain may get more relief and sleep better by combining two commonly prescribed drugs, a new Queen’s-led study shows.

When given both an anti-seizure drug (gabapentin) and an antidepressant (nortriptyline), patients experiencing neuropathic pain caused by nerve damage or disease reported less pain than when they took one or the other individually. They also slept better, reports Dr. Ian Gilron, director of Clinical Pain Research for two departments – Anesthesiology and Pharmacology & Toxicology. “That’s a very important issue for this group of patients, whose debilitating, unrelenting pain often interferes with normal sleep,” says Gilron. Since 45 per cent of Canadians being treated for neuropathic pain take two or more pain drugs, there may also be safety issues, he adds. Funded by the Canadian Institutes of Health Research, this study focuses on two specific types of neuropathic pain: diabetic neuropathy and postherpetic neuralgia. However, researchers believe the methodology could also be used to study chronic conditions such as cancer-related pain, degenerative spinal disc disease, and the pain experienced after chemotherapy and mastectomies.