When we sit down to dinner as a family, Chris has very little to contribute to the conversation. Alex, his younger brother by two years, usually has a great deal to say about his new job or what’s happening in the world. Alex is living at home while he saves for graduate school. Chris’s two younger brothers are reaching the milestones that we think are important for young men in their twenties – higher education and jobs are the primary ones. Chris left university after a year and a bit, not able to continue due to psychosis.

Yet, when I came home from work yesterday, Chris and Alex were carrying on an animated conversation in the kitchen as Chris prepared the chicken risotto. They seemed to find a common ground. Chris had taken it upon himself to haul out the Bachelor’s Cookbook, pick up the missing ingredients at the store and get to work on producing an excellent meal. This was after going to his one university class in the afternoon.

Everyday Chris makes his bed so well that you could bounce a quarter off it and does any kitchen clean-up that didn’t get done the night before. He sees his psychiatrist twice a week. He sees an occupational therapist once every two weeks. He sings in the church choir on Sundays and practices Thursday nights. He has voice lessons Thursday afternoon. He helps out around the church, fixing things, moving things or stuffing envelopes. He volunteers from time to time at the local soup kitchen.

It is puzzling, because despite the fact he is able to do all this, he does not have paid employment neither is he at university full time. He reads a great deal of intellectually challenging material, which is a huge relief after a two or three years when he was able to read nothing.

I wonder sometimes if he is a victim of low expectations, not ours but theirs, meaning the psychiatrist and the occupational therapist. I fought against the low expectations that I sensed were at the heart of the day program Chris was in for two years. Ian and I pushed him to audit classes at the local university when it was clear that the psychiatrists thought that this was too much. I don’t think Chris would be as far as he is now if we had succumbed to low expectations in the beginning. But since Chris’s relapse a year ago, we have stopped reminding him that he should be back at university full time or doing something meaningful with his life. I believe that our over-eagerness to get him out of the nest caused him to relapse.

He relapsed after he had been slowly and carefully weaned off his two medications. So, he is back on medications, which some maintain make it impossible for him to work or go to class. That is exactly why I wanted him off the medications in the first place. I thought he would never be able to make it on his own if he stayed with them.

The other day Chris mentioned that somebody suggested to him that he do some volunteer work. What were they thinking? Surely this wasn’t the occupational therapist or the psychiatrist suggesting this. He is doing volunteer work, lots of it. It is paid work and a full-time occupation that is eluding him.

I am not as convinced as I once was that the medications are preventing him from doing things. I’m sure they do slow him down, but I don’t think that’s the whole picture of why he isn’t fully back on track.

It is hard to be patient. I hope patience isn’t perceived as low expectations.

There is a lot of blogging right in response to Gianna Kali’s excellent post musing about how teachers say they value creativity, but this is not the classroom behavior they reward. True enough.

Ron Unger in his post suggests that “instead of stigmatizing them or labeling them as forever ill, we might better collaborate with them in helping them figure out where they might have gone wrong while also staying open to the possibility they have a lot to teach us.” Or, as I wrote in an earlier post, teach them to swim.

There is a difference between being dragged down by who you are and having who you are work for you while minimizing the rough edges. It’s called self-awareness. The onus is on you, however, to ask for help and be willing to change. I am thinking of a woman I know, who I am pretty sure would warrant the label bipolar had she ever done time in the bin. To my knowlege, she hasn’t, but maybe some time in there would have made her realize some fundamentals. She is a highly talented person in her field, but she has trouble holding jobs. This is no surprise to anyone who knows her. She simply bulldozes her way over people.

Her daughter I also know. Her daugher is as bright as the mother, but has a habit of getting ejected from every school she has attended. She cannot be in the same room with other people (peers and adults) without insisting that everybody pay attention to the specialness that is her. She is a royal pain in the ass. When you look into the girl’s eyes, the light is never off. She is hard-wired to the “on” position. Her energy is way too intense and it gets her in trouble, lots of trouble. The mother thinks it’s everybody else’s fault, of course. The teachers obviously don’t value her creativity.

Had this woman more insight, she and her daughter could be on top of the world because they would be making their natural talents of leadership work for them, not against them. But she has paid a price, because people avoid her like the plague. Their leadership style needs a trim. Nobody trusts mother or daughter. I am assuming that what I refer to as their leadership is really creativity in both cases because creativity often looks uncontrolled. “Artists” are often ostracized. Mother and daughter’s in your face leadership, is, in a way, art. It’s definitely high drama.

I was put off one day when the mother confided to me that her sister had recently been diagnosed with schizophrenia, knowing that my son had also been bestowed with this distinction. “That explains her,” she said, rather triumphantly. Schizophrenic, she’s a write-off, was the message I got. To me, one could speculate that both sisters are working off the same energy imbalance, but the one who gets the current diagnosis of schizophrenia is the one who couldn’t carry on the charade any more, whereas the woman in question has cut a wide swath through human relationships with her keel still upright, always one storm away from tipping over.

I am relating this cautionary tale, mainly to underscore that unacknowledged and/or untreated schizophrenia/bipolar has social costs, but they also mark personality traits that are valued in society. Rather than feel ashamed of a diagnosis it is much more liberating to think, “right, there is obviously a problem here, which I can work on through a variety of means, but I don’t want to lose sight of the energy and creative flair that has made me who I am.” It may be that you have to crash first before this insight comes.

In the meantime, nobody, except maybe your mother, is going to like you very much.

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.

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.

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.

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.

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.

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?