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Well, everyone, the books are published and are in the warehouse, waiting for that magic date of August 24 when they will be available in stores. Lynnie and I will be on "Good Morning America" on Aug. 31 but I don't know which hour of the two so, alas, you'll have to watch or tape both in order to catch us. There is going to be a review and a picture in People Magazine, date uncertain, and Reader's Digest will have an interview published in the October issue, which comes out on newstands in September.
All this may seem very exciting but to me it is very stressful and I am not looking forward to the various public appearances we have lined up for us: readings, radio interviews and some TV and such. I don't even know all that is planned because I'm trying to act like a Buddhist and have Lynnie and our publicist only tell me about the next one each time, so I won't get exhausted thinking about a whole week's or month's worth and start worrying that I can't do it. As a Buddhist-Catholic friend of mine told me, "There is only today." I think if I can take this to heart and live it, this attitude will help me to get through the next few months rather than knowing all the appearances in advance. I don't want to get myself all worked up about how much we have to do and how little time I'll have to recuperate between them and how little time I'll have to myself etc. I just want to know what I have to do "today" for today. And if I can't, well, that's just for today. Wish me luck!
Where do they come from? Mine were usually of a negative grandeur as you may recall. I was the devil, the most evil person in the world, I needed to kill myself or burn myself to a crisp in order to save the world from my poison. I even went so far as to set my leg on fire, prelude to setting myself on fire in order to do this, and burned marks on my forehead to prove I was Cain so people would be warned and stay away...as a result I have been ECT'd, restrained, isolated, locked up for months and all the other humilating things they do to people they think might seriously hurt themselves or others. And obviously I might have, and did. But whence came this sort of thought? And why do others believe they are God or Jesus Christ or as one person I met claimed, the song writer who provided John Lennon with his music. Their delusions may seem more positive yet I know they suffered as much as I did because they too went unbelieved and scoffed at. Where does this kind of false belief, clung to in the face of so much evidence to the contrary, come from?
I'm not completely sure but it seems, in both positive and negative incarnations, to derive from a terrible sense of one's lack of worth in the world, one's secret knowledge that the illness one has robs one of everything one was supposed to have, be and do, that one is entirely useless and empty and without value in life. THe illness itself produces this feeling, and the feeling is secondarily strengthened as a result of having the illness. Some people respond by thinking that if they are really nobody, they can create a powerful false self to make up for the lack of value in real life. Others, like me, accept our lack of value, only exaggerate it until it becomes the dominant factor in our lives and colors everything, so that we cannot but refer everything to it and see all through its lens. We become convinced that if all in our lives is contaminated by our worthlessness, maybe all in the world is contaminated as well.
I don't understand the transition from feelings of worthlessness to actual belief in false facts, the transition to delusion. I don't think anyone does. But I believe the connection is there, from lack of any sense of self-esteem transitioning somehow to delusions of grandeur. And that either positive or negative delusions all derive from a negative feeling, a lack of positive self regard. I don't think anyone who truly feels good about him or herself would ever suffer from a delusion of grandeur.
I have to write about these rather strange hallucinations I experience quite often, completely undisturbing and rather like watching a movie or a dream, which I think they might rather be, though I am completely awake at the time.
I usually am doing something absorbing, like a craft project or cleaning something mindless and suddenly some people appear, first in my peripheral vision, then in front of me, and start talking, perfectly normally and having a conversation about something. They are clearly visible though reduced in size and perfectly, utterly normal in every way. Once they were a mother and daughter arguing about whether or not the daughter should take horseback riding lessons when she wouldn't clean her bedroom, and the mother was being very unreasonable about it, but stopped when I interrupted to tell her so...then a billionaire 50 year old man and his brother appeared on the gangplank to a yacht and I knew the man was an A-hole and the brother was a decent sort from the clothes they were wearing, the 50 year old in posh get-up and his brother in white jeans and a normal striped shirt, like an ordinary sailor. Then a lady in a yellow hat appeared and was about to board the yacht when I got mad and told the 50 year old to cut it out, his brother was a better man than he was. He looked startled at this evaluation and shut up...
That's just to give you a flavor of the sort of things that happen in these hallucinations. They don't disturb me a bit and they NEVER berate me or have anything to do with me. I am completely extraneous to the discussions unless I intervene to save someone, and then I usually win the argument or stop the fight, which is usually what is happening, people arguing about something or some injustice occuring.
The famed Dr O, as I call her, who is a sleep doc as well as a shrink, suspects that these may be the sort of hallucinations that are really REM sleep, or dream states, occuring when one is awake. It can happen in narcolepsy, which some of you may know I have had since I was about 20. I have long had a problem with REM states occuring in such a way that I can't tell if something was a dream or happened when I was awake, but usually it is the other way around: usually I dream things and think they happened in real life, not that I am awake and really dreaming...Hmmm, I think those things are different, aren't they? Anyhow, I'm usually in bed, clearly asleep when the other mistakes happen, even if it's awake that the confusion occurs. At these other times I KNOW I'm awake and aware, but the hallucinations happen anyway.
Does this happen to anyone else? This is the reason I wanted to know if anyone else suffered from diagnosed narcolepsy. If not, I'd love to know if this sort of thing is familiar to others without narcolepsy, so I'd know that in fact it isn't that after all. What do you think it is? Is it as strange as it sounds, or something any of you have frequently, or even occasionally, gone through?
Every day I wake up happy. I'm happy to rise in a new day, healthy and awake and able to face another day with good cheer and in a good mood. No matter what happens during the day, I find I can take it mostly with equanimity and good grace, though at times I get anxious or spend time vegetating while my mind goes wild (it does that a lot, I admit).
Everything feels like accomplishment: taking a shower or brushing my teeth gets me kudos from myself; I praise myself for getting out and going grocery shopping; I'm proud of myself if I clean out a wretched junk drawer in the kitchen and get it all neat and tidy; I'm thrilled when I change my sheets and make my bed up perfectly ship-shape and quarter-bouncing perfect. Those might seem like mighty small things to make me feel content, but contentment can in fact come in small packages, if you let it.
People often feel like they have to do great big things to allow themselves to have a good day, to feel like the day has been worthwhile. But schizophrenia quickly brings one down to earth there. So much feels like an effort all the time that tiny things become mountains. And when one thing gets done so many things are given short shrift to make room for that one thing! So when one reaches a state of health when one can accomplish several small things a day, without neglecting too many essentials (I too often forget to eat!) it is a tremendous development in one's health and well-being. And one feels one can be justifiably proud and content.
The person with schizophrenia learns that the small accomplishments are just as good as the enormous ones in allowing oneself to have had a good day, and in fact, it's a lesson that many driven entrepreneurs and business people and doctors and lawyers etc should learn themselves: relax, let the small things rule your day, let the small things make your day a good day and allow yourself to feel content if they alone can leave you feeling proud. That is not a bad lesson to learn in the end, and one can learn it from people who have experienced schizophrenia. So even we have things to teach others!
Briefly: 1) Does anyone out there suffer from central nervous system Lyme disease? If so, could you contact me privately at firstname.lastname@example.org (unless of course you are...well you know who you are, T3!)
2) Does anyone else experience symptoms of narcolepsy or been diagnosed with it? Could you contact me as well?
Some day I will write about my experiences with these two disorders, which complicate my life no end...and you thought SZ was complicated enough?! But for now, I'm just looking to "talk with" some SZ-ic companions on those other roads less traveled, to share experiences and investigate to see how the various diseases might be interrelated.