WAGblog

Explanation of absence

I feel I owe an explanation, to all, of my long absence from this blog, so briefly, then: in September of last year I committed an act of self-injury, in response to command hallucinations, that was extremely serious (the nature of which I prefer to keep to myself though I will talk about it in private) and was hospitalized immediately. After surgery and three weeks in the bin I was released, only to be admitted in and out several more times over the winter. When the hospitalizations finally came to an end at the end of February, no one expected anything more than the same old, same old; I'd probably stop one of my many medications soon and decompensate and end up right back where I started.

But things were different this time. I was scared and I was sick of the hospital. Sick enough of it to swear I'd do anything to keep from ending up there again. So I made up a contract never to refuse medication, and signed it, and I gave it to the visiting nurses (rather than anyone coercing me) and told them that if I ever objected taking a pill of any sort they could pull out the paper and show me I wrote it and signed it.

It hasn't happened yet. I've taken every single gd pill prescribed for me, every single day...and look where I am, out of the hospital since February, doing fantastically well, and writing in my blog again. I guess they were right all along to say the medications would keep me well. I just always figured, once well, that I must not need them anymore. I still tend to think that way, but I pull myself up short and shout to myself: Get a grip, Lady! Why on earth do you think you're doing fine to begin with? Don't you DARE start tinkering, with anything!...And so I don't. I want to. But I don't, and I continue to stay well.

A lesson well learned, but a hard one to get through one's head. Don't you agree?

Diagonally Parked?

I'm going to recommend a book to those of you who hide behind your computers and write e-mail and never leave your houses, thinking you are content and that you make a terrible impression in person and that you are publically unacceptable and people don't like you when they meet you or they wouldn't if they ever did so you'd better keep all your friendships cyber...and on and on and so forth.

Like me, you have schizophrenia, but all the years of remission and breakdown, remission followed by breakdown, breakdown after breakdown after breakdown, have taken their toll on you and you may no longer feel acceptable to society, and this has produced such anxiety that, like mine, it has turned into paranoia, and taken the form of voices speaking out loud.

Fundamentally, according famed Dr O, this is my anxiety speaking, social anxiety, born of my many years of dysfunction and illness, and it can be dealt with, it can be fixed, though it will take work, and I'm only just now able to begin.

Check out the book DIAGONALLY PARKED IN A PARALLEL WORLD by SIGNE DAYHOFF PhD and see what you think. She starts with several case histories, good examples of the different forms social anxiety can take. I can only say this: if you tend to hide behind your computer, writing e-mail instead of meeting new people, for fear that no one would like you in person, this book is for you!

What are Hallucinations?

Like many people with schizophrenia, I've struggled with this one for years. I mean, I have heard ad infinitum that a hallucination is a creation of one's own brain, not something "really real." But try to tell me that when I'm under a barrage of hateful persecutory voices and I can only answer, "Well, they sound pretty damned real to me, and they're scary as hell, too!" That is the crux of the problem, for me at any rate: how to understand the facts of the matter -- that the voices are only an illusion, auditory ghosts, that they don't actually exist "out there" but only "in here," in my head, when it sounds precisely as if they are coming from everywhere else?

Trying to explain this to me, my doctor had this idea, which I now pass on to those of you who are still struggling with the issue. I suffer from frequent bouts of double vision, but I'm sure all of you know what that's like and have experienced the phenomenon at least once. Well, in double vision, you know that one image is false (even though you may not in fact know which one) that there can only be one person in a pink hat, say, in front of you, not two identical twins of each and every person passing by. And you know that this is a problem not with reality, ie NOT with out there but with "in here" with either your eyes or your brain. That's one good example of how the brain can make external reality appear to change and affect one from outside one's self.

Now, and this is what took me a while to process because it was so difficult to make the leap: take that same notion of double vision and apply it to voices, to auditory hallucinations, or to hallucinations of any sort. A hallucination is by definition a perception, a feeling, a sensation that seems to come from outside one's self, right? But if I think about it, it is unlikely that people would be hiding in the bushes and criticizing me or carping about the way I walk or telling me I have no right to be outside the car at a rest stop so they probably aren't, or I'll grant the possiblity that they might not be, for argument's sake. So where must this perception of the voices I am hearing come from? From my own brain, just like the ghost image in my double vision: I've created the illusion of hearing voices outside my ears from inside my own brain. I've created it, my own brain created the experience, not the other way around!

Now I can't say that I always grasp this or can act on it consistently. When the voices harangue me, I still go into self-protective mode and behave in a paranoid fashion because I can't help but hear what I hear and respond with terror. But we're working on it; we're working on ways to stop that immediate response and ways for me to short-circuit the fear by telling myself, first, that it's just my anxiety that creates the voices to begin with. But I'd be the last to tell anyone it's easy. It's the hardest thing I've ever done.

Living with Schizophrenia 3

To continue: the one time I don't live in the present is when I know that I have to do something in the future, something I don't have the freedom to change or cancel at the last moment. THEN I worry, and worry, and worry. Because I might not feel up to it, or it might go badly, or they might not like me, or they might talk about me, or they might sneer at me, or I might look wrong, or I might walk wrong or or or...You get my drift, I'm sure. I can't help this. Try as I might I can't stop the obsessive ruminations about what will go wrong and how I won't be able to handle things, all because I must do something in the future and have no choice about it. I know that this is merely an exaggerated form of a normal concern most people have, but it is excruciating, because it happens even when the future event is supposed to be fun or exciting or happy...I can't even bear to think of celebrating Christmas or my birthday because of it!

Living with Schizophrenia 2

If you have a schizophrenic friend or family member you're all familiar with the sight of former patients at the local coffee shop -- Dunkin Donuts most likely for its low prices -- sitting around drinking coffee and smoking cigarettes, sometimes talking together, just as often silent, each seemingly lost in his or her own personal world, and you probably feel sorry for them. But having been part of these groups many a time, I can tell you that, at least on my part, I was having a good time, quite enjoying myself. When we spoke, I felt we were speaking profoundly, and when we didn't, I felt our silences were companionable. But the important thing I want to impress upon readers is this: if the others' experience was anything like mine, and I suspect it was, I had no memories to speak of, that is, no past to go back to and think "Wow, I used to be such and such, I used to do such and such. What happened?!" I realize that some did have a past, had accomplished goals to regret losing before the illness overtook them, and perhaps they were thinking about what they lost. But I suspect they weren't as aware of the gravity of their losses as others without the illness would have been. As for the future, well, for me, as I said in my last entry, it was and is a total blank, impossible to contemplate or predict even as a mental exercise. So in that silence I seemed "mired" in, I was actually contemplating the present moment all the while, thinking about that cup of coffee and cogarette, about how great it was to smoke and drink at any time of day, about how wonderful it was to have a few extra dollars and friends to go out with that day, about how lucky I was...and so on.

That's my point. I live forever in the present, so much so that everything becomes a kind of meditation. If I decide to do some seemingly trivial craft project -- like make a papermache box out of an Altoids tin, I enter into it fully, so much so that the box starts a conversation with itself and I become a mere bystander, listening in on the conversation! And I continue, fully absorbed, one with the activity, as long as the moment lasts, or as long as my mood or ability or state of mind lasts. That could be three hours or five minutes -- there's no predicting. But when it's over, I put the project away and go on to something else the spirit, so to speak, moves me to, the next thing I will enjoy, perhaps cigarettes and coffee, who knows!

This is one of the blessings of schizophrenia for me. Something I do not suffer from but something all might benefit from: the ability to live each moment for itself, to live fully in the here and now. It might be perforce, but that doesn't detract from the value of it. So, even in a bad mood, I expect to enjoy life, and in the end my dark mood doesn't last, because I find something to enjoy and it evaporates (with some help, admittedly, from effective medication to take the edge off); it's a circular way of living, perhaps, with a kind of positive feedback, but at least for me it has its advantages.

Living with Schizophrenia

Hiya all. I'm back! I can't promise I'll write a lot, or regularly, but I can promise to do my best. Meanwhile I can tell you that our book, which will be published by St Martins Press in August or September and called Divided Minds : Twin Sisters and Their Journey Through Schizophrenia , is in production now. We have finished the copyediting stage and proofreading and just got all the permissions for use of photos in and...and...and...well, what more could there be? Next step is the galleys, unbound copies of the book, essentially, which are sent out to various people -- I guess reviewers and buyers and potential writers of a forward and so forth, dunno all the ins and outs but basically the book as it will be without the cover. Then, finally, the book will be available to one and all, through Amazon and other outlets. BTW, it's already listed at Amazon.com! (see the above link)

Now onto the subject of my entry: One aspect of life with schizophrenia is its unpredictability. I never know how I will feel, what I will be able to do, what my state of mind will be from moment to moment, hour to hour, let alone day to day or week to week. Any future plans, therefore, are impossible. Friends, good friends, friends who truly know and care about me, know that it's best to call and ask, "Would you like to come over this morning?" for example, rather than to suggest a visit several days in advance or even a few hours later, because I am apt to suddenly switch from being eager for a visit to being in a bad mood, or feeling unable to converse, or being slowed down and incapable of much movement at all. This is why, or one reason why I cannot work at any regular job -- because of my complete lack of predictability, even to myself. I cannot even count on writing n number of hours a week or month, let alone per day. No way could I write a book to a schedule, unless I had years to do it in, and even then it might be too much pressure. The one being published now took me ten years!

So while I have never considered myself spontaneous, I have perforce become a creature bound to impulse and spontaneity.

The other aspect of this is that the only way I can get myself to do anything is if I can find a way to make it enjoyable. If I find a task boring or displeasureable, invariably I will put it off and put it off until it never gets done: the bill goes unpaid, the room grows filthy, the food goes rotten, the friend gets angry etc. But if I can make it fun, I can do it. So I try to find a way to enjoy it, or do only those things that are in some way pleasureable to me. So I've become, me, to whom hedonism is disgusting, a person who only does things for pleasure.

And this is because of the unpredictability of schizophrenia, the fact that I cannot tell how I'm going to feel or be from one moment to the next. In short, I've become a person who "only does what she wants when she wants to do it" and I can't say I'm proud of it, but it is what it is.

The next time I write I want to write about the advantages to living eternally in the moment, to living in the present, being unable to have a foot in the future, and having in some sense no real past to speak of.