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I've been on the Haldol 10mg for a few days now and it seems to be helping finally. Though I still hear the music, the actual messages are unintelligible again and the music itself is much softer and in the background as it should be. I don't even really need to play the radio to drown it out anymore, that's how diminished it has been today. Hurrah!
While I do not usually leave my apartment, I have taken three walks in the last five days. Not very long ones, only a mile or so, and only with Joe, but at least I have actually put on my shoes and brushed my (dirty) hair and gotten out in the sunshine, such as it was. I never realized it had gotten so warm until today Joe told me it was shorts weather and that I didn't need the sweatshirt I'd been wearing all day! It was delicious to finally go outside and feel warm, even in the wind. Now I need to take a shower, on my own without prompting, for the first time in...well, several weeks.
My newest interest in natural history has taken me to geology, which I was always interested in, ever since I took a geology for poets course in college but which I never felt capable of teaching myself, though I have tried to over the years. Now, suddenly, I feel like it is coming together, that I finally "get it," get something, can see what I couldn't before about what makes one rock, say a granite, granite and not basalt and so forth. I can only test myself using pictures at the moment, since where I live is all pavement and/or grassy lawns, not a rock or pebble in sight. But I'm not far from Dinosaur State Park, where, from the very name, you can guess there are geological formations of some interest, including the famous footprints...
What I need to do, once I have some more of this under my belt and feel rather more comfortable that I understand it than I do now, is to do some synthesizing of botany and the plant cycle of natural history with this geological appreciation...Why do plants grow where they grow? How does geology influence the growth of forests or grasslands or desert scrubland etc. How do we affect these as well? And questions like that. How do plants affect geology, since after all plants are the basis for all coal and trees control erosion and wetlands affect river delta growth...
The thing is, it is hard, very hard, for me to muster the -- I dunno what it is actually, the mental cohesiveness, psychic energy, the pulling together, the something! to think about it, just to sit and think. It hurts my brain to sit and think, and it is too hard to do so! I can't keep anything in my brain long enough! And to actually lay out questions and possibilities and cross them over and oppose one to another and answer them seems daunting beyond possibility. I have to write things down just to remember where and what I was thinking about, what my train of thought was in the first place. But perhaps, using a piece of paper, I can at least "think" through some elementary synthesis about these processes and thereby solidify what is, right now, a shaky, fragmented, purely fact by fact kind of understanding. It feels soooo hard to actually think, without a thinking aid like a picture to remind me what I am supposed to be attending to. That seems to be the only way I can concentrate these days: using pictures of some sort to help me get information into my head, whether they be imaginary or actual. If I don't visually see what I have to think about, actually see it, and have that image to refer to, I almost cannot keep my mind on it or keep it in mind...I'll literally forget what I was thinking about and have to work to retrieve it without that picture.
Does this mean anything to you guys out there?
In the first I am on the right (short hair) and in the one below it I am on the left (in the gray sweater and green shirt). Lynnie is the one with the long blonde hair.
The voices are telling me what to do now...the same old same old...But I have upped the Haldol as advised and am holding on tight. Have no intentions of giving in to their demands, but it's hard to take...the constant barrage and yanging...Meanwhile, can't read to distract myself BECAUSE of the Haldol, which as usual has ruined my eyes and attention or keeps the tiny amount of Zyprexa from helping me as it does, dunno which, but the effect is the same...
I'm not sure why all this is happening. I know for a year, from February of 2005- Feb 2006 it wasn't a problem. Is it only because I stopped the Haldol in or around March of this year? It was then too that I finally began to be able to read, and have been able to steadily since then, till now. And I started Zyprexa, what? about a month or so ago? Or was it at the same time? I can't remember as usual...I do know that the reading coincided not with the reduction in the Haldol precisely so much as with the addition of the Zyprexa, just that first 2.5-5mg or so. I caught up on almost all the magazines I had saved up from months before (the ones I hadn't thrown out in utter disgust with myself at not being interested in them enough to read them...thinking it was me, my essence, that found them boring or that could not get up whatever it took to maintain an interest in them) and had just started reading a book, when this business, the voices and messages within the singing started up again...I HATE the GD Haldol...It ruins my life. And despite Dr O's promises to work with me to find something that doesn't deaden my interest, so far nothing has been done or found that works to stop the voices and yet does not hinder me in other ways...
Right now, tho, the important thing is to stop the messages cold. Those cannot go on, or they will get dangerous as they yang and yang at me. So I will take the Haldol despite all my complaints and talk to Dr O about what to do after there is some peace and quiet out there for a while. What else can I do?
Here's the URL of a speech we gave at the University of Virginia Medical Center. It is missing our banter and "act" at the start but it containts the bare bones of the speeches at least.
The constant music and singing is destroying my concentration: "we're gonna make you...We're gonna break you. Come on and learn, baby, how some must burn. If you won't, we know what to do!" It plays even when I am in the woods looking at wildflowers. I want to write another poem but I can't concentrate or pay attention well enough to read, much less write. I'm getting afraid of what they are saying to me, what it means and why they are saying it. Seems like they are broadcasting somebody, me or others? Why now, and who are they? I have to keep reminding myself that they aren't real, just my mind's creation...But I can't always keep that in my head when they keep at me! I play real music, but I can't have it on all day and night, and as soon as I turn it off, blammo, the voices start in again. Sorry to go on and on about the same old thing...
We just got back from Arizona, and I am happy to tell you all that I survived both the four flights and the metal detectors. The temperature was near and over 100 but we had a good time, an audience of 350+ and a standing ovation, so that made it all worthwhile...But I was very glad to get home again, to rest and recuperate after 3 weeks of nearly non-stop "events" such as this past one. The next one is NAMI-NJ on June 10th I believe and then it is out to Sioux City, Iowa on the 14th of June. If anyone in NJ or Iowa wants more detailed info, do leave a comment or write me and I'll post them.
Meanwhile I am just vegging and trying not to let my mind get out of control with the voices and my brain's attempts to make sense of them...Sorry not to write more than this. But another time...
...about schizophrenia. Author's note: Anabasis literally means "the going up" though in Xenophon's Anabasis it has always been translated as "The March Uphill" (Don't worry. After the title, the poem is quite readable, I think.) Transpiration is the name for what happens when water is pulled from the roots up through the leaves by evaporation. Sulci are the furrows of the brain's externally convoluted or wrinkled appearance. Also, I hope the word "mad" doesn't offend anyone, but I figure we get to use it if anyone does. And in poetry it has such resonance that almost no other word will do at times.
I WOKE THIS MORNING TO MUSIC
I woke this morning to music,
song seeping from the wall pores, transpiring
at the surface, water from leaf, a choral din
so harmonic, so noisy—and I knew
unheard by others, unhearable, hallucinatory—
I leapt from bedwarming.
Barefoot on the cold slick of linoleum
my ear to the kitchen radio: real rap
battered the air with its distractions
and just enough poetry to drown out
the music my mind created
in sulci of deepest silence.
They direction us downward,
descending, always descending
into hell, towards our primal
animal selves, those who do not know
we mad climb shaky ladders, up
rarefied trees, ride elevators
that terminate on suicidal rooftops—
anywhere away from all this noise
called life on earth, for what is going mad
but the self scared nearly to death
and seeking asylum
in the highest places?
Last week, I met myself on the street,
in June in a wool coat and a pair of sunglasses
over regular ones. She begged me
for a cigarette, but I had quit
recently and smugly, told her I don’t
smoke as if I never had and didn’t
understand. She faltered, fell back a step,
turned away, mumbling imprecations.
I swallowed: a bitter saliva: guilt,
the alum of regret, but it was too
late to remember to be
kinder to the kind of mad-
dening self I used to be, the fright-
full Ophelia looking for a way out
or just another open door, the ticket
to be anywhere but here.
(*changed June 7)
I am now taking 2.5mg Zyprexa in am and 5mg Haldol in pm plus my regular meds (including Geodon 160mg and Abilify 5mg in am) with the result that the voices and MUSIC have decreased almost to zero, though I still intermittently hear a few notes repeated over and over or some faint singing with the words unintelligible, but no spoken words at all. And so far without any change in my appetite or loss of the ability to read. That is to say, with the Zyprexa-INduced ability to read and feel enthusiasm for reading intact - on no more than 2.5mg!
As for website forums that I visit, I am beginning to think I shouldn't go to any of them...Just use my blog to broadcast outward and not look for communication back in...Because no one wants interaction with me, or no group does. I put the kibosh on every group I join and kill the threads I enter...I KNOW this...and no amount of kind comments addressed to me afterwards can convince me otherwise, because I know they are lying to me...Why bother though, when they know they’ll be happier if I just leave? I've already left one site's forums, and won't return lest I make the people there unhappy again, and kill off a few more suicidal people and ruin a few more lives...But none of them there had SCZ that I could tell, so they didn't understand much of what I went through anyway. But the site that I go to now, they do all have SCZ and it is/was important to me, that group of contributors, because I need to meet people who experience what I do, and to whom I can talk...And there now too I feel like I poison every thread I join, every topic I answer; that even when someone addresses me positively, they are saying something negative "secretly." Why don't I just get the message and not go to website boards or forums? I'm not wanted and I do only harm not good. I can't stay anywhere very long before I do harm or long enough to get anything out of joining in the first place...
So why do I keep trying? I need to accept my loneliness and aloneness with this illness and get with the program...Just this past week I finally met another person with narcolepsy, for the first time in my life. Do I need the world? Why wasn't that enough for me? I once knew people with schizophrenia...yes, but I was not yet firmly diagnosed then myself. I didn't talk then about my experiences in any event. I was still too shy and embarrassed by MI and also too taken up by my symptoms to talk ABOUT them. Now that I can and want to talk to others with SCZ I know no one, except Joe, of course, and we have NO symptoms in common at all...No one we know believes we have the same illness, which is really weird and says something about how arbitrary the Dx seems to be sometimes!
Music is beginning to play in my bedroom while I write this in the living room, singers -- women in background with a deep-voiced man in foreground, but no words distinguishable and all of it rather faint and playing in very short repeated snatches, not really a tune but just the impression of music...Hard to say what...Not really singable, not the way it usually is at least....One deep note in a rhythm with a higher note or two on top in an opposing rhythm. Enough! If I ignore it I may not "hear" it at all, at least in the sense of not paying attention to it. Later: now I can “hear” the song “Mama’s little baby loves short’nin’ bread” whatever that is, clearly being sung, though at a low volume and in a Beverly Hillbilly style accompanied on a honky tonk “pianner.” Now it sounds like TV-commercial “jingle style” singing...Whatever that is!
This week on Thursday we travel to Bucks County PA for yet another NAMI engagement, most likely unpaid except for expenses and book sales. But I think we are supposed to have a big audience, 300 or so, which will be good. We do a radio show in Philly on Friday and go home afterwards. (It turns out, as Lynnie just told me, this NAMI gig is a paid event, so even better! Lest anyone think we are getting rich doing this, rest assured we have yet to make any money that doesn't go right back into paying our publicist, who got us the gig. If we “make” anything at all, it is only pennies on the dollar of what Lynnie could have made staying home and seeing patients...In that sense, she loses money each time we speak.)
Next week is similar to this one but with three different events, one each on Wed, Thurs and Fri. And the third week of May we have to fly to Arizona...which I dread the most, because I am deathly afraid of the metal detector and of being wanded and of the other hurdles to getting on the plane and of flying in general and air marshals and...I know, the risks of flying are infinitesimal, but that doesn't mean they are zero.