A person who has figured it out

Sean Blackwell is a Canadian citizen, now living in Brazil, who writes and blogs about bipolar, which he considers his spiritual wake up call. He is on a mission, like I am, to take the fear out of psychosis and make it meaningful. He manages at times to make it even funny. Catch a most interesting interview with Sean and watch his channel on YouTube.

Here is a book review from his blog bookshelf. He has captured what I also notice, that people with schizophrenia are natural born quantum physicists.

#11 The Holographic Universe – Michael Talbot

Experiences of one-ness, timelessness, all-knowingness. A sense that everything is connected to everything else. Sounds like bipolar mania, right? Well, it also sounds a lot like Quantum Physics, and while your Newtonian psychiatrist may think your experiences of being ‘one-with-the-universe’ are delusional, there is a hell of a lot more science behind those experiences than behind what he’s sellin’.

Not only was Talbot one of the first to introduce the increasingly accepted idea that the Universe is essentially holographic in nature, he actually discusses on page 65 how bipolar people tap into this level of reality in a way that normal people can’t.

The expressed emotion of meds

Did I say we were done discussing Chris? I wonder from time to time if it would be all-round easier if I were married to myself. Ian and I had another disagreement last night over the meds, leaving me (and him) rather sleep deprived this morning. This particular area of disagreement wouldn’t arise if medical authorities hadn’t overreacted in the beginning, when Chris had his big crisis. By overreacting I mean piling on medications, then switching them when, surprise, surprise, he didn’t get better, then insisting that medications are the only way to handle the problem. How many doctors has he seen since? Chris’s recovery to date, while remarkable in many respects and a cause for real cheer, has been protracted I feel because of the narrow way his crisis is defined by mainstream medicine. The meds are always there, like the elephant in the room, casting a shadow over our day-to-day lives.

Ian and I see meds differently, not only for Chris, but in how willing we are to take them ourselves. For myself, I look for alternative (homeopathic, etc.) means as a way to avoid becoming prescription dependent. I worry about being 80 (I should live so long) and on a debilitating cocktail of drugs that have been building up over the years. I certainly don’t want Chris being drug dependent at his tender age, and I see no reason why he should be. Sure, he’s on the lowest dose possible of two meds, but he’s still on meds and I don’t see any movement afoot by his doctors to get him off them.

Ian is all for not second guessing the doctors about how they handle the meds, and I, well, I’m all for second guessing them. Case in point: Chris’s med handling psychiatrist (as opposed to his psychotherapist) has told Chris that if he is concerned about his weight gain, then Abilify is more of a problem in this regard than Serdolect. She has no doubt consulted the product sheets and if they say it’s so, by golly it must be so. All the companies now are trying to win the Best in Show award by boasting that their products don’t contribute to weight gain. So how come consumers continue to gain weight?

The weight gain is expressed emotion big time. The side effect of gaining weight is an unwanted further intrusion into an already difficult situation. In truth, Chris hasn’t gained much weight this time around, but it has still added several inches to his waist. Chris is always checking himself, berating himself for eating too much, and eating up a storm in the kitchen because he can’t control his appetite. This is not his fault. I know where the problem lies. I tell Chris that it’s not his fault, and not to beat himself up over it. It is a temporary situation, I tell him. The unsaid part is “temporary while you are on meds.” That is my expressed emotion on a subject that I don’t even care to entertain.

In other areas of the world where expressed emotion is supposedly lower, which also tend to be areas where there is not as much access to neuroleptics, the fall-out in expressed emotion from meds is at least one expressed emotion that is avoided. Ian and I have retreated once again to our “we won’t discuss it” policy. The rapprochement in this area will percolate along for a few months. We’ll see what will happen.

Un-expressing emotion

One nugget of information I picked up early on in my research into schizophrenia was that some doctors noticed that people who recovered had parents who barely noticed that their child was ill. It was hard to know what to do with that kind of information, so I just tucked it away at the back of my mind.

This, in retrospect, is low expressed emotion. It is harder to do when your relative is floridly psychotic, because you have to pretend that nothing is really very wrong, when something seems obviously very wrong indeed. I have tried this “don’t see don’t tell” strategy all along with varying degrees of success. Right now, after seven long years, it is working very well. My husband and I don’t discuss Chris. He is no longer the subject of our concerns after a day at work. This is in sharp contrast to the first few years, when every odd gesture, every odd statement, every missed appointment, was a cause for worry. We discussed whether Chris was ready to take a course, we discussed the meds ad nauseum (and disagreed over the need for them), we worried about his future.

We are done discussing Chris. Recently Chris enrolled for a single course once again at the local university. “Fine,” I said to Ian, “if you want to check-in with him on how he’s doing, and monitor his output, great, but count me out. I don’t want to get all involved in worrying about whether Chris can pull it off this time. I don’t even want to discuss this with you. Just keep in mind that if Chris finds himself struggling, you will have to be the one to pull the plug on the course before the drop date.”

So far, our “don’t discuss, don’t tell” strategy is working. I’m sleeping at night, Ian and I aren’t tense about Chris. Chris seems to be doing okay. I don’t ask about his coursework, even in a superficial way. I try not to initiate conversation with him. I have learned the hard way about how unnerving this can be. If we just let him get on with it, Chris will be fine and so will we.

Doctors and EE

Emotional expressivesness is also practiced by doctors. To be alive and to be human is to be somewhere on the scale of low to high emotional expressiveness. Doctors do not yell at their patients, yet if high EE can encompasses pity and negativity, then how the doctor interrelates with the patient is also a factor in patient outcomes.

How much training do physicians receive in this area? My guess is it’s very low. When Chris was first hospitalized, I was not able to visit him for a couple of weeks and during that period I spoke with his doctor over the phone. She said, and I quote, “Well, he’s not one of our sickest patients…” She made it clear without being very clear that he was indeed very sick. Now, what was I supposed to make of a remark like that? It struck fear into my heart. I had no background in the illness. It sounded like a death sentence to me. It too, was expressed emotion.

When I finally got to meet the crew at the hospital, they were not upbeat at all. They were factual, I would say, in that they were using the terminology that they had learned in medical school, but this does not come across well with laypeople like me and in fact, it seems very clinical and scary. I needed reassurance that Chris was going through a rough period but that he would be expected to emerge from this intact and probably even stronger. I did not want talk of diminished expectations. I needed help being strong. I wasn’t getting that message from the hospital environment.

The whole hospital scenario is of dimished expectations, unfortunately. This is expressed emotion. It is a mood, it is art therapy class, it is drab surroundings, it is doctors telling parents and patients that they have a lifelong illness that can only be managed by meds. When they speak about hope, they don’t seem to have a clear view of a happy outcome. They don’t follow their patients long enough to know that there are many happy futures out there.

Most of the doctors in institutions that we have come into contact with are young and in their thirties. What they know about mental illness they were taught in medical school. What they have been taught in medical school can have a tremendous impact on the experiences of people on the ground. They cut off patient hopes for recovery early on through their own lack of experience and their medical school belief that the brain is damaged. This is expressed emotion that negatively impacts the patient and the family.

Pity not (and other things about Expressed Emotion)

If, as they say, high emotional expressiveness on the part of family members leads to more frequent relapse by the patient, it would be nice to know what is meant by this. From my own experience, I offer up the following.

It is not good to criticize. While this seems obvious, it is not always easy to carry off, especially when your relative is acting strange, doesn’t answer, stands in a corner or never smiles, to name just a few things that come to mind.

Criticism isn’t just verbal, it is actions and expressions. Keeping a poker face when you otherwise want to roll your eyes or grimace can be learned and rather quickly becomes easier.

Crying and other big displays of emotion in front of your relative also upsets them. Again, this is obvious, but often almost asking the impossible of the family on a daily basis, especially when the crisis first breaks.

I have been guilty of all of the above. There are five of us in our household and there is a lot of Expressed Emotion, although, being the only female member of our family, I am told it comes mainly from me. My sons and husband seem to think that when I think that I am not raising my voice, they hear me as actually raising it. “Chill,” they say. “I am chill,” I retort. “I can show you what a raised voice is, if you really want.” I grew up in a family of girls. There was always a commotion/emotion going on. We were verbal. By and large, men are not. They are the Neville Chamberlains of domestic life. Peace at any cost. They are not at all comfortable with female emotions. The higher female voice is a raised female voice, in their opinion.

If you pity your relative, this is going to come across even if you think you are hiding it. This is one area where I can claim the higher ground. I never pitied Chris, because I was determined that he was going to get better, come hell or high water, so there was no need for pity. That’s one reason why I deliberately avoided buying into the diseased brain model of schizophrenia that is perpetuated by some of the better known names in mental health.

Rushing your relative into something that he or she isn’t ready for sets the stage for relapse and all-around frustration. It is often hard to appreciate that just because your relative isn’t ready to take on bigger projects now, doesn’t mean that he will never be ready. Here, patience is a virtue.

My track record with regard to Expressed Emotion is pretty mixed, but I am aware of this and have been working on rectifying it.

If you are looking for a therapist , , ,

Below is an except from an interview with Dr. Daniel Dorman, author of Dante’s Cure: A Journey out of Madness. Dante’s Cure is about the psychotherapeutic work that Dr. Dorman undertook with a young patient suffering from catatonic schizophrenia. I am flagging this with readers as a resource for finding an experienced psychotherapist who doesn’t buy into schizophrenia as a biochemical imbalance. The website also provides an international listing of psychotherapists.

What can patients and family members do to help promote this kind of recovery? Where can they turn for help when they feel their treatment is failing, or could be better?

First of all, don’t buy the broken brain-chemical imbalance theory. If you or your loved one is caught in the vicious cycle of taking medications to control feelings, consider finding a therapist who will help you understand the origin of the problem. If a family member suffers from schizophrenia, you might obtain a referral from the U.S. branch of the International Society for the Psychotherapy of Schizophrenia and Other Psychoses

I had a dream

I had one of those sleepless nights. Ian woke up and padded out to the bathroom to get a drink of water, and I fell back into a series of cat naps. When I was awake at one point, in order to put my mind at rest I asked God to show me some sign that everything was okay.

The dream involved a series of small tornados that were brewing. I was sitting in a house talking to Chris who was seated on the other side of the window in the garden. Suddenly the wind picked up and the trees and bushes bent almost horizontally, but Chris hung on. Then suddenly he was gone. When the wind subsided I ran out to find him. I was relieved to see a blond haired man walking up the hill toward me, until he passed me and I realized that this was not Chris.

I began to wander around the leafy residential streets of our small city. I stopped at a fenced front yard where there was a young mother with a blond haired baby. She explained that the baby had been deposited by the tornado and she didn’t know whose it was. I was overjoyed to find Chris, until I realized that Chris was no longer a baby and this couldn’t be him. Even so, I introduced myself to the woman and explained that I was looking for my son, who had disappeared with the tornado. As I looked behind me, I could see a series of black funnel shapes that had moved on and were hovering over the far side of the lake, their tails touching down sequentially. The tornados were moving away but there was no news of Chris.

I stayed for a few hours with the woman, the baby and her friends (our old nanny dropped by to visit) with the intention of figuring out what to do next. I was feeling very sad. As I got up to leave, someone tapped me on the back. I spun around, and it was Chris! We hugged. He looked a little battered but had weathered the storm and was smiling.

Same meds, who are we kidding?

To me, there is no difference between schizophrenia and bipolar, other than stigma. People would vastly prefer to publicly announce themselves bipolar, Patty Duke and Carrie Fisher being proof of this. There are vastly far fewer people willing to come out and say they are “schizophrenic”. There is a pecking order here. People labelled “schizophrenic” find themselves at the bottom.

The distinctions are artificial from the point of view of treatment. There are no diagnostic tests, no genes have been found, people with these labels get the same meds,and they may find that this year’s label of bipolar is next year’s schizophrenia, or vice versa. Their diagnosis may even morph into depression.

I say that symptoms are on a continuum and it depends where on the continuum you were last found to earn you the current label.

If you are getting the same meds as the next guy, this should make you very suspicious of these labels and these meds in the first place.

I was heartened when Chris, for a brief flowering moment (his “Prague spring”), was becoming bipolar. This to me showed progress, from being totally incapacitated by existential angst to becoming in your face, annoying, hard to handle, bipolar. It showed a level of emotionalism that he previously hadn’t demonstrated. He was becoming more real. He was the same person, though. Had he been taken to the hospital for the first time without his previous psychiatric label, he most likely would be deemed “bipolar”.

When you start racking up one or more labels, it’s high time to question the science that is supposedly underpinning it all. Think about it. It is extremely cynical of the pharmaceutical companies and completely stupid for the medical profession to pretend there are these distinctions when, in fact, they are handing out the same pills.

High Emotional Expressiveness (EE)

Emotional Expressiveness or EE is the level of expressed criticism, worry or emotional involvment on a scale of low to high by the family members towards the patient and has been linked with increased risk of relapse when the emotional involvement is too high. Here is some background information that you will find useful. I notice that many studies of emotional expressiveness were undertaken decades ago in the 1960s and 1970s. Very likely the increased use of medication beginning in the 1970s to treat mental illness as a biochemical imbalance unrelated to the patient’s environment has a lot to do with why we haven’t learned more about this since.

Parents and spouses are not the only people coping with the demands of the patient, yet they seem to be the people researchers single out when studying emotional involvement, overlooking hospital staff, psychiatrists and intervention programs.

The very nature of a program means that you are turning the spotlight on the individual and, with all good intentions, of course, may be making that person uncomfortable about their prospects in recovery. Medication that the patient is often told must be taken for the rest of their life also conveys an emotional message of defeat. The doctor’s mere presence may reinforce that something is wrong with the patient. The use of the word “patient” is loaded with meaning.

People with schizophrenia in under-resourced countries where EE is low, by that I take it to mean where rehabilitation programs and medicine are scarce, tend to have better outcomes. They don’t have access to all the resources to “fix” things, so maybe it works because they just leave their relative to his own devices, supported by the belief system of the family and reinforced by the community that the person is a temporarily invaded by evil spirits. They know they can do something about evil spirits.

In contrast, the Western world prides itself on individualism. The individual is often at odds with the community. The community itself doesn’t have a fixed belief sytem because it is made up of individualists. All values are now relative in the West. We give off mixed messages because there are so few fixed ones.

The complexities of what goes into sustaining a recovery are many. The good news is that you can learn to reduce high EE in order to avoid relapse. We could start by looking at the social constructs surrounding our current treatment of mental illness.

Maybe it’s time to just stop worrying about it. Shall we all just take a valium?

How to lose the fat you can’t shake

This one’s for any woman who has gone on an antidepressant to cope and weaned herself off it, but still can’t shed the pounds. Doctors have a term for it: Metabolic Syndrome. Unlike men, women who take certain antidepressants/antipsychotics have an observed weight gain that dieting and exercise cannot shake. It happened to me.

I gained thirteen pounds on Paxil. When I weaned myself off it after about a year, the weight gain stayed. I went back to my old diet. The weight didn’t budge. I increased my exercise. The weight didn’t budge. I ordered special supplements from a getting off psychiatric drugs website. Still no change. I threw out all my one size smaller clothes. After four years I just gave up, figuring that chubby me was forever. Then I got lucky.

As a last ditch attempt I asked a diet doctor what to do. He said that in the past he wasn’t a very successful diet doctor because his patients didn’t really lose the weight for good. “All that’s changed,” he added. “A year ago I found out about the Simeon Protocol.”

Dr. A.T.W. Simeon was a doctor in Rome in the 1970s when he published his book Pounds and Inches. According to Dr. Simeon, the best time for a woman to lose weight is when she’s pregnant. Eating for two is a myth. If you are overweight you’ve got more than enough non-essential fat to see you all through. There are three kinds of fat, structural, normal reserve fat and abnormal fat, which Dr. Simeons likens to fat locked away in a bank vault, not available to the current (normal fat) account user. When people diet, he noticed, they tend to look gray and haggard, their skin loses its glow. This is because most diets go after the reserve fat, and then the structural fat, but never get to the deposit of abnormal fat.

The solution is to make the dieter (man or woman) a little bit pregnant using Human Chorionic Gonadotrophin (HCG), a naturally-produced hormone found in the urine of pregnant women and the great apes. HCG allows the banked abnormal fat to be available as fuel, rather than remain locked away.

In order to summon the abnormal fat to the reception desk, so to speak, a 500 calorie a day diet is called for. Before anyone faints at the thought, keep in mind that the diet includes taking HCG under the tongue twice a day, which suppresses the appetitite. My husband and I went skiing when we were on the diet, hunger was not a problem.

HCG is not approved by the FDA in the United States as a diet supplement. HCG has been used safely in Europe for decades as a dietary aid.

Dr. Simeon died shortly after his book was published and before he could be considered for a Nobel Prize. The man’s a genius. He deserves one.