Tuesday, August 6, 2013
Some general stuff and some personal perspectives.
These concepts of the "realities" that schizophrenia and bipolar create in sufferers' minds are hard for anyone to conceptualize. People want to believe that it's just "thoughts" or some state of mind you can make go away if you just try hard enough or worse that it's something you're just bringing on yourself. This is incredible frustrating. The implications are twofold; one is that it's somehow a choice as to what we have in our heads or how our heads are operating and two, that it's not "real". There's a third one but I'll get to that at the end.
I have some fascinating material from the Hearing Voices Network regarding people who hear voices and their frustrations and distrust of the folks in the white coats. Unfortunately, as I'm not currently living in a home of my own and all my things were packed away for me (during my latest hospitalization), I don't have access to the material but I'll muddle along as best I can with my imperfect memory. It was from research into schizophrenics by famed Dutch psychiatrist Marius Romme. What he went on to discover was that hearing voices was something separate from or not necessarily connected to schizophrenia (despite this being more than 20 years ago and the now incredible body of evidence the clods at the American Psychiatric Association refuse to acknowledge this). Without getting into the politics of psychiatry (which I easily could!) what Romme found among those who hear voices is an incredible frustration with the psychiatric profession and/or other doctors. Number one is that the people knew they were not schizophrenic, only - and "only" is not a great word here - that they heard voices. Romme uncovered - in sort of a literal sense of the word - hundreds of "hearing voices people" who'd gone underground with their problem because of this frustration with with the professions. They were regular people with regular jobs and lives who just happened to hear voices and the profession wanted to label them, put them in hospitals and drug them. Worse, the profession showed no understanding of the issue of hearing voices. Doctors would, invariably, insist that the voices were not real. Well no, the people would strongly feel, they absolutely are real. And back and forth it would go and the doctors only recourse would be to prescribe drugs which they insisted would make the voices go away. The drugs didn't make the voices go away. The people became so frustrated and displeased that they, as mentioned, simply went underground and found methods on their own to cope. It was Romme's work and discovery of this group that would lead to their banding together and the founding of the Hearing Voices Network, a peer to peer group for people to talk about any kind of inner mind phenomenon that uncomprehending pencil pushing doctors don't understand. I've attended local meetings of this group and I nearly cried it felt so good to be around people who get the weirdness that goes on inside my head. They listen, they understand, they don't judge, they don't try to tell you that you're "just imagining it". They GET IT.
Oh dear, I did get carried away there, didn't I. The point was, however, to further the concept of different inner realities through the use of hearing voices. For hearing voices people the voices they hear are NOT their imagination and they don't simply just go away (with lots of work for many people they can), the voices ARE real. The other point is how frustrating it can be to be told this stuff going on in your head is not real or that it's just your imagination or that drugs make it go away or that you're just not trying hard enough and so on. As I said, after dealing with so many people who told me the most hurtful things (while attempting to be well meaning, I know, but still), it felt so wonderfully good to be with and talk with people who got what I was experiencing. They are a wonderful, wonderful group and organization. It was through attending these groups that I FINALLY understood my suicidal psychosis episodes, something that the dimwits in the white coats never listened to me about or explained. I shouldn't say dimwits, I know, but after a baker's dozen of them, all with different views, methods and so on ranging from nothing's wrong to the worst case of bipolar and continuing to get WORSE and then finally finding out on my own what was going on and getting far better through my own efforts (not unlike the hearing voices people who finally, fed up, went underground), sorry, I think they're dimwits. And that's by far the mildest term I can think of. You should hear me when I get wound up about what I really think. Trust me, I'd peel paint off the walls with my language. There are people who saw, and were horrified, by what I went through that would too.
Oh, one of the standard treatments for schizophrenic and bipolar peeps is antipsychotics. "Anti" + "psychotic" = something that reduces psychosis, right? (well, they don't prescribe it for that in bipolar peeps really. They just have this vague idea that it helps "knock down" mania). Well, it turns out that it can actually make psychosis worse. Something that I personally discovered myself. Not fun. I'll give you the studies and the science on this another day though. But back to inner realities.
Bipolar creates a lot of inner realities. I'm not even sure I can describe them all. As I said in a previous column, bipolar (and schizophrenia as well, I suspect) are whatever it is plus your own personality. I have plenty of my own personality quirks and bipolar just takes those and magnifies them (sometimes this is good though). How this all works is an utter and complete mystery (and trust me that it is a mystery, I am extremely well read on this not to mention all my own "data" in my head plus interviewing several bipolar people). I've had many manic episodes in my life, no two of them the same (though some similar). Sometimes they're great, sometimes they're horrible. I'm pretty sure that my suicidal psychotic episodes were just twisted variations on my mania and manic visions. That would rate as pretty bad. Other manic episodes played visions of lovely stories in my head that were literally like watching a movie in my mind. Not like a dream, very different from that. Like a movie, like a vision. An hour or more long. I just "sat back and watched". In one manic episode I was going to be a head coach for a team in the top professional hockey league in the world, in another I was going to take over and save a major corporation that was going through difficulties. None of this is conjured up by any effort from me. It just comes. From where, no one knows. Why? No one knows. It just comes and completely takes over my brain.
Depression visits upon me some horrible times. Again, it just comes. I don't make it happen, I don't wish it to happen, nothing happens. It just comes. The mind just works very darkly during these times. I cannot control it, I cannot make it go away. Now, with years and years of experience, I can have have some insight but only perhaps after some time can I realize what's going on. Maybe. It's a LOT of work.
Mania, depression, mixed episodes, all kinds of variations in between, these just happen and when they happen that's my - or any sufferer's - reality for that day, or week or month or moment. There's nothing we can do about it, that's what you have to understand. Awareness can help, yes, but only maybe. It depends on how strong any given event is. Most often it's only after that we can look back and think, "right. that was <insert the type> episode. It's passed now and I can settle down". Or many, many, many variations of such.
It's a myth that drugs make things "all bettah". People have the nerve to tell me - based on what, I can only imagine - that all I have to do is "get the right combination of medications" or "tweak my medications". I know they're being well meaning and only want to give me hope but honestly. I've had - my latest count - eighteen psychiatrists or residents. I've been on every combo there is. And I just got horrifically, horrifically worse. So don't tell me about meds. I spend about four chapters and a hundred thousand words in my book dispelling those myths so I won't get into that here.
I think there are methods. Peer to peer counseling is one. (I'll no longer deal with people who haven't been through this before). Meditation is another. I'm pretty deeply read in neuroscience. I think there are signs of hope there, especially in neuroplasticity.
I also know that I am in the highest risk group there is for bipolar. I'm older and have had it all my life and have cycled through countless cycles of mania and depression. This is well understood in the literature. All the literature that talks about hope talks about young people, those who've only had a cycle or two. Like any illness, it's much better when caught early. Twenty percent of bipolar sufferers will commit suicide. I'm in the the high risk group for that, something that I looked into in a series of three earlier posts. I know I have some very serious challenges ahead, something that would be stupid to ignore.
People write to me and tell me that they've been through this or that and survived. That's sweet. But it misses the point. Illnesses of the brain are different. When your body is sick you still have the most important weapon available to you - your brain. When you're sick with a brain disorder, your most valuable weapon - your brain - is the very thing that's not healthy. I don't know how to get across how much more challenging this makes things. Not to mention that the brain is one of the most mysterious structures in the universe (ask a neuroscientist like David Eagleman). Honestly. We understand more about distant stars than we do about the human brain. This is not to say that major illnesses such as cancer are somehow easier to deal with. Of course they're not. And I'm grateful that generally I have have my health. I'm just saying that brain illness are not only tough but they're tough because the power of the brain is what we need most to get better from anything.
I've heard people compare brain illnesses to cancer and such. Which is a nice try. I'd argue, however, that they're possibly worse (especially the worst cases of schizophrenia and bipolar). I say worse because we know so little about the brain and don't for a moment believe that "doctors" really understand what schizophrenia and bipolar are. They don't. Don't let their impressive web sites fool you. They don't, as I've been trying to get across, know where schizophrenia or bipolar come from or why they happen or where any of the visions and different realities come from. All they have, and know, is an incomplete understanding of behaviours and some crude drugs with which to try (all of which produce worse long term outcomes).
But onward and upward. There ARE things to work on and I will get to those at some point.