Saturday, December 27, 2008

Schizophrenia Symptoms: Voices

For me it usually starts with music.

Not the kind you know is only an echo of some recently heard song playing inside your head, something you understand is actually your thoughts repeating the song to yourself, though it may start out that way. No, this music, once it becomes audible, is quite distinct from that; for one thing, I hear the music coming from outside, not inside, my head, as if an invisible radio is playing from within the walls or floor or some place well-hidden. There might even be a DJís commentary in the background, mumbled, indistinct, but adding to the impression that I am listening to an actual radio.

Except that the music is never right; the words or tune are always sinisterly distorted, repetitive and ominous-sounding, so that even the most harmless or delightful of songs soon turns to misery-making.

But it does not end there. Rarely if ever does it harmlessly fizzle, sputtering away into nothing. Instead, it invariably escalates. Occasional bursts of melody become constant and nerve-wracking as songs change and deform and come back to haunt me, or certain phrases may be repeated endlessly, over and over and over, to the point that I want to scream and have to turn on a real stereo as loud as possible just to drown them out.

Then the jumbled, vague DJ commentary turns nasty, as recognizably human voices start calling me the worst names they can think of whatever would be the most hurtful, harmful and insulting. Usually some variation on ìFatso!î or Satan’s spawn! This is not necessarily done at full volume. Very often, I have the sense that what is spoken is done so secretly, the way, on the old gameshow Password, the correct words were whispered to the TV audience, supposedly so the participants couldn’t hear.

For me at any rate, this secret exchange of information always gave me the sense that I alone was being given the answers, which is in fact what I believe they wanted each viewer to feel. But this is often how the voices sound now: as if they are passing along secrets or letting me know something no one else is privy to, even if it is only to insult or deride me. The Password quality of these exchanges is so powerful that I know, or feel I know, that what they tell me must be the truth, a truth given only to me.

While I have heard loud voices and once heard Japanese being spoken in the walls, a Japanese curiously enough that I could completely understand, though I speak not a word of the language, much more often do the voices take on this secretive quality. They may go on and on, but will do so as if careful not to be overheard. Which only adds to my disquiet, as I sense what is in fact true: that no one hears what I hear.

But my understanding is that often they don’t hear it not because it isn’t real, but because the speakers deliberately pitch their voices in such a fashion as to prevent anyone but me hearing them. So naturally people will deny the reality of what I hear. It is meant for me alone; they aren’t supposed to hear it! But I do hear it, I hear something, and after the first few years, when the messages were relatively benign, all I’ve heard has been nasty, abusive or downright dangerous.

There is a part, early on, in the movie LULU ON THE BRIDGE with Mira Sorvino and Harvey Keitel, where Keitel’s character is walking alone at night past a wall where it seems he, or the audience, can hear people mumbling and chattering invisibly. This struck a chord in me, because it wasn’t the movie-loud screaming that many people associate with hearing voices, but rather what is more common for me: the experience of hearing conversations or commentary as if from a room away or from behind some barrier, the apparent distance from the source of the sounds making it seem all the more possible that what I hear is real rather than imaginary.

But what struck me as I watched it, was how similar this was to my experience of hearing real sounds from unreal sources. In my case it is not just memories or fantasy or imagination, or at least it doesn’t feel that way. It feels, it sounds, completely real and reasonable, which is part of the dangerousness of it, because if the sounds are real, if the content of what is said seems reasonable, then shouldn’t I reasonably trust them to tell me the truth and instruct me how to act? If the little dancing red man from the BioHazMat sign seems completely real and credible, both as a being and as an authority, why then should I not obey his dictates or listen when he tells me I must immolate myself and here’s how.

The problem lies in the brain, as Iíve been told innumerable times and as I believe to the best of my ability, but how can I distinguish real human voices or the actual radio from ones that don’t truly exist? It is a conundrum that escapes my solving it every time, because I have no touchstone, no yardstick to measure a human voice or radio DJ against that would reliably tell me which ones are hallucinatory and which are not. The big question becomes, how can you distinguish between the real and the not so real when your brain, which is supposed to do the discriminating, is the one simultaneously creating the confusion?

A Friend, her Death, a Lesson

Susie D was my one longtime friend in high school, an all girls private day school in Connecticut. From 8th grade, when I started, through 11th, when she left for boarding school, she was the one person I could count on to be loyal and accepting, even in the dark days when my other classmates were beginning to laugh at me and dub me the zombie, because I stared blindly into space and would not respond to conversation, not even a direct question.

A tiny, birdlike thing, with pipe-stem limbs, an oval face, and thick wavy hair, Susie had large, dark, hyperopic eyes, magnified only the more by her thick lenses. She was by the far the smartest girl in my class, having skipped a grade in days when that was virtually unheard of, and was especially talented in music ñ composition, violin and piano and languages, though frankly she was good at everything she undertook. Even when, for unknown reasons except general disaffection and unhappiness, she refused to do any schoolwork and her motivation slipped, her grades plummeted, she still easily got into Columbia (Barnard in those days), and missed Harvard only by a hair.

Then, just before she turned 21, she took an overdose of pills and alcohol in her dorm room, and died, the first suicide at Barnard in nearly a decade. I know this because though Susie and I were only exchanging letters at the time, with rare phone calls in between, my father saw the article in the New York Times and announced -- to one and all, but his intentions directed at me, sitting as far away from him as possible in the dining room -- Guess who died!

Naturally I had no idea. Who? I grudgingly responded.

Susie D-- he said, with what seemed like a certain gloating satisfaction.

I felt my heart go cold and dead. Now what had I done? Why hadn’t I known she was in trouble? Why hadn’t I saved her? Hadn’t I walked by her house during school vacation only a few days earlier, or so it seemed, and not stopped to say hello, mostly because at 80 pounds I felt I was too fat to be acceptable? Iíd even crossed the street and hid my head lest her father, working in the pachysandra outside, recognize and invite me in.

In the days and weeks that followed, Susie was with me everywhere. In my dreams, in my fantasies, even seemingly in strangers I passed on the street. The pressure of my guilt kept me up at night, and during the day I saw everything with the eyes of the newly grieving. I never let an hour go by when I didn’t think of her, desperately afraid that were I to slip and forget her, even for a moment, that ultimate betrayal would push her away forever. I often woke from sleep thinking I could call her to chat or even just to get her expert help in solving the notoriously difficult Sunday Times doublecrostic. I forgot she was dead. It seemed to me that if I kept her in my thoughts, she was still truly and actually alive, and I did all I could to keep her that way, refusing to accept the stone-hard fact of her death.

One particularly troubled night, I went to bed late and when I dreamed I dreamed of Susie, as I so often did. I describe this episode in my book, and so won’t ruin the suspense by relating it here, except to say that I woke feeling better than I had in months, certain I’d had a visitation and had been advised by Susie herself to let go of my feelings of guilt and understand she’d chosen to do what she did. Most important of all was her “message” that I was not to follow her to the grave, but was to “join the party,” continue living my life.

I never forgot her, though she died over thirty years ago. And every so often late at night I’ll find myself writing a poem one yet again about her or to her. But this is not unhealthy. Susie was my friend. Why shouldn’t I still remember her, her wittiness and intelligence and loyalty, with fondness and affection? In some sense it *has* kept her alive, if only in my memory, and for that I am both glad and grateful.


Thursday, December 25, 2008

Psychosis: Y2K Meltdown

TITLE: Y2K Meltdown (An original blog entry from 2004 with a comment from 2008)

NOTE: The following is part of a chapter from our book SOLO FOR TWO. (Later it became "DIVIDED MINDS; Twin Sisters and Their Journey Through Schizophrenia" (St Martins Press 2005) I have only included a partial chapter half, not my sister's half, though an integral part. I could not include much but here is what I have...The comments are real and whole and were written at the time of the original blog entry.

I barely remember the day the world ended. Even now it replays like a grade B movie.
Early morning shot, the sun is barely rising over tired-looking city streets. Cut to a small apartment bedroom on the top floor of a high-rise. Cigarettes overflow in half a dozen ashtrays; coffee cups, clothing and books are strewn about. A middle-aged woman, distraught, smoking frantically, is half-yelling half-whispering on the phone to someone she calls Nina but doesn't seem to know well. Thereís a sudden hammering at the door. She puts the phone down, yells hoarsely, "Who is there? Go away!" More pounding followed by sounds from the phone. She fumbles, brings the receiver back to her ear. " What are you talking about? Nina! You told me you wouldn't!" She's still protesting when the door is forced open. Paramedics and police quickly take over...FADE

"Nina" whoever she is at the other end of the hotline -- must have secretly called the police. " Get out of here!" I yell, trying to push them back, still on the phone.

"I hate you, Nina!" I scream, "I told you I didn't want the goon squad. Why did you do this?"

The female officer takes the phone from me, murmurs something into the receiver. She hangs up. I back up against the wall, trying to get as far away from the intruders as I can.

Now, whatís going on here, Miss Wagner?

It's Pam, just Pam. And I would not jump. I mean, I mean I was not sure what I would do. Don't you see? I do not need to jump. It will all be over in just a couple of days.

What will be over? one of them asks.

But I can't explain. How can I condense into a sentence or two something that has been building up for more than a year? That the world is ending, that I can't stop it, that it's my fault because I didn't try hard enough to warn people. Tears start coming down my cheeks. But instead I insist I'm safe. I won't do anything to hurt myself. A good night's sleep is all I need.

I'm not lying exactly, just not telling the whole truth. I don't tell them that Dr K, the psychiatrist that saved my life, is retiring unexpectedly, after taking a six-week vacation starting in January, or that my best friend and I had a terrible fight right after Christmas that ended our 20-year relationship. I can't tell them I really believe the Y2K bug will bring an end to civilization, should a Biblical Armageddon fail to materialize. Nor if it did, how I would most certainly not be going to heaven. Nor can I tell them how the voices, silent for three whole months on a new medication, have returned with a vengeance, bringing hell to my nights and days. With scathing criticism and a running scornful commentary on everything I do, they sometimes order me to do things I realize I shouldn't, but I might not always be able to. Or that I barricade the door each night for fear of beings from the higher dimensions coming to spirit me away, useless as any physical barrier would be against them. I don't mention the NSA or the DIA or the Interpol surveillance I've detected in my walls or how intercepted conversations between these agencies have intruded into TV shows either.

Oh, I want to tell them all this, I really do. But I know too well what would happen, and I don't want them to take me away. Still the tears keep coming. A paramedic reaches out to put a maternal arm around my shoulders, in comfort.

"Don't touch me!" I shriek, shrinking from contact. Go away! Leave me alone! Get out of my apartment. Now! Who the hell do you think you are?"

They look stunned. Meanwhile my hands are doing their writhing thing up near my face. But I canít help it. It takes too much concentration to still them and keep my brain under control at the same time.

One of the policemen looks through my room. Pawing through my things, he picks up one of my pill bottles, then gestures to one of his buddies. They confer in low voices.

Together they collect all my medications and ask me if I have been taking them.

"Of course!" This is the truth. One cop shakes his head. I don't like him; he hasn't been on my side from the start. I realize he's connected to the Five People who monitor my movements wherever I go, their true identities always disguised. He has something to do with the other dimensions, the Supermetal Cannister and most important of all, Grey Crinkled Paper. I'm not sure how deep it goes. But something tells me to keep as far from him as I can.

In the end, it's no dice. All they can see is the mess, the pill bottles, the ashtrays, the way my hands keep moving, my tearfulness. And the inescapable fact that I live on the 12th floor. To them it suggests too much trouble, more than they can leave behind. They're going to take me to the hospital, just to cover their asses, they insist, to make sure I'm all right. If the doctor okays it, I can come right back home. But I know they're only sweetening an offer I can't refuse.

I know this. I know this. But I start yelling anyway. I'm all right, I scream, I'm not going anywhere. I don't need a doctor. I'm fine, goddam it!

That's when they harden. I don't look at people, but I should have, I would have sensed it coming. They huddle around a crackling walkie talkie. Then one of them tells me in words of one syllable that I have two choices: I can go with the EMTs the easy way or with the cops the hard way.

Take your pick, Pamela, we don't have all day.

Shit...I mutter. I know they mean it. I've been through this business before. I give up, but it's hard to swallow when they start crowding me, watching my every move. Do they think I'm going to slit my throat with a sharpened sock?

Can I at least put on my clothes without all of you watching?

The female medic motions the men out of the bedroom. I struggle into a dirty black sweater, add dark sunglasses on top of my regular ones, then wrapping a hooded black muffler around my face for protection -- I shuffle out into the living room in my coat. Clinging to what shreds of dignity still fall to me, I keep my body rigid, making them lift me onto the stretcher like a plank of wood. Then they start tightening the straps around my hands. This time I do resist.

"Please, no! I'm not gonna do anything, I'll be good, I promise. Panic has turned my voice to a whisper. They sigh, looking at each other, eyes rolling. I know what theyíre thinking: Oh no, not again. Amazingly, though, they concede, deciding to risk it rather than face another fight. But I feel useless and despised, a worn-out left shoe, something they want to dump as soon as possible.

Finally, the procession -- guards, handmaidens, heavy artillery begins down the hall to the elevator. I donít know who is out there watching, but even with my eyes screwed shut I sense the old ladies peeking through their doors. I can feel the stares, I can hear the rumor mill start to grind.

You old hens, I mutter. Chickenshit begock-begocks! My hands fly up to my mouth to muffle the curses because I know my swearing always gets me in trouble. But it is some protection and what else do I have to defend myself with?

You know how people say only sticks and stones can break your bones? Well that is a damn lie. Even bullets are nothing compared to the ax-murderers in people's eyes. And ain't it strange how it is the same people murdering you who just moments before were murmuring, "Don't be frightened. We are going to help you --"?

A new problem. They want to take me to Hartford Hospital, the biggest and nearest. No way, José I refuse, pointblank. The ER nurses there have tried to kill me one too many times, not to mention the Five People who once secretly irradiated me in the nuclear physics lab when I was there. They will take me to the University Hospital or I am not going anywhere. That ís my right and they had better do what I say, or else. A mostly empty threat, perhaps, but they know I am right. And they agree, though it is a much longer drive and it is obvious they cannot wait to get rid of me.

The ride uses up all my resources. When we finally arrive, I am sweating, trembling, at the end of my rope. The paramedics roll the gurney inside the ER, sign me over, then disgorge me into a small cubicle. The smell of the place hits me like a shockwave, rubbing alcohol, disinfectant and something so sweetly acidic it makes me retch. Before I can say anything, a nurse and an aide hurry in, wrestle my bag and coat away from me. Without a blink, they order me to take off my clothes. I hit the roof, yelling and cursing. "I am not fucking undressing! There is nothing the fuck wrong with me!

You should be ashamed of yourself, one of them scolds. This is a family hospital. Oh sure, I scoff, those asshole rugrats out there spitting up on their parents hear worse every day on TV!

"That is enough, Pamela," she warns.

"Bullshit! I don't give a fuck!"

If I don't calm down, they'll give me a needle, the other threatens.

"I am calm!" I scream, and I counter-threaten , even louder. I'm thinking, Stay calm? I'm fighting for my life here!

Then it's a blur. As if on signal, people suddenly crowd into the small room. Men in surgical scrubs grab me while the nurses, still telling me no one is going to hurt me, hold me down and I'm yelling and struggling against all of them and somehow my clothes are taken away and somebody comes at me with a syringe full of something the aides smirkingly call "Vitamin H --Haldol -- and it hurts like hell when they jam it in my rear end.

That is where the struggle ends. They have won and they know it. The room clears like a bad fart, but I let the entire ER know I intend to sue, I have a right to refuse medication and it was given to me against my will, violating my constitutional rights and --

Loud enough for everyone to hear, one of the aides mutters, So fine, sue the whole damn hospital. Meanwhile, shut up and go to sleep.

Then I'm left alone on the narrow hospital bed, side-rails up, in nothing but my underwear and two flimsy hospital gowns, one open to the back, one over it, open to the front. I can only seethe at this injustice. Rocking, muttering, sobbing, I rage and rage at the aide guarding the doorway. But she only ignores me, yawning with deliberation and exaggerated boredom, telling me in no uncertain terms: You are nothing new. I have seen it all before.

They canít drug me up without a fight, I keep yelling, continuing my harangue. I will see you all in court, just watch me!

But after a while I get woozy. I can't sit up straight any more. I have to hold onto the side rails. My words get mushier and mushier. My brain fogs up, my eyes cross. I am getting confused; I cannot remember the beginning of my sentences by the time I get to the end of them. Against every inch of my will, my jaw sags, my eyelids droop and I slump back against the pillow. I think, Maybe I will close my eyes for just a moment. Though I promise myself I won't give in to sleep, my mind keeps drifting away no matter how I try to bring myself back up to consciousness. No use. It may not be voluntary, only the drug that makes me compliant, manages me, as they put it, but either way, before I know it, I am out like a light.

I wake in the psychiatric ward, on a bare mattress on the floor of an empty room. Alone.
DATE: 01/04/2006 02:25:17 PM
Something that struck me later...

your last line of waking up on a hard floor of a psychiatric ward is reminiscent of a huge mental hospital that we have here in Bombay. The conditions of the patients kept there is pathetic, they are treated with absolutely zilch dignity by the staff there, and I was really depressed the first day that I was posted there. At least you know that you shouldn't be handled inhumanely...the patients here don't even know that, they take whatever crap is thrown towards them...
DATE: 01/04/2006 02:21:08 PM
Hi Pam

I'm doing Masters in Clinical Psychology from Bombay, India. Over the past 6 months I've interacted with psychiatric patients, most of them diagnosed with schizphrenia. The way you have described your psychotic experiences really cut across coldly, and it is chilling to discover that the people I've come across in the past 6 months have such gruesome experiences as yours. You are in fact one of the few people who has been able to vivdly describe your condition, and I really thank you for that. I think the patient's perpective of her illness is a fact that has been long overlooked by the medical profession in their quest for discovering a 'cure'.

Hope you stay well.


AUTHOR: Spinelli
DATE: 04/30/2004 07:16:13 PM
When I read about personal experiences such as yours with the 'system', I am reminded of my own experiences with bureaucrats, police, and social workers in addition to my older sister's experiences as a person with schizophrenia. The bond and partnership that you and your twin sister share is remarkable and truly inspirational. It is about time that I face up to the fact that my older sister needs me despite both of our broken pasts.
AUTHOR: puzli
DATE: 01/10/2004 03:27:24 PM
hey pam

it amazes me how well you can describe the situation...makes me realize my own past that i've never been able to discuss with anyone in detail.

do take care of yourself

love always

AUTHOR: Nacon Four
DATE: 01/10/2004 10:33:09 AM
Hi Pam,

I'm a regular poster to the board; but this is the first time I've read your Weblogs. I want to say something rational, uplifting, maybe inspiring. But all I can say is the horribleness of this disease is evil; striking you in this way. I hope that you have good days (if, for no other reason) to spite the bad ones!

Good luck and God Bless!

Nacon Four
DATE: 01/10/2004 09:16:21 AM
Hi Pam,

I thoroughly enjoyed all of your writing and poems. I can't find an email address on your site, but if you have some spare time, I ask you to write me after checking out my website, particularly the poems and the journal. I have been diagnosed as "psychotic" for 8 years now, and always look for friends with the condition.

the url for my homepage is:

thanks & take care,


Wednesday, December 24, 2008

Personal History

TITLE: Nurtured Nature
DATE: 01/05/2004 08:37:28 PM
and 12/25/08 at 12:18AM

A bit of personal history: when I was in fifth grade, in England, I was spending an afternoon alone in the flat with no one but my father around. For some reason I don’t recall, I remember him appearing at the playroom door, his normally ruddy face apoplectically florid with rage. I must have done something wrong, but what I cannot for the life of me remember. All I know is that he soon had me by one arm, and was swinging with his free hand to swat my behind, and I was swerving to avoid the blows. We lumbered around in circles like some misshapen two-headed elephant. I was screaming and crying, more in fear and rage than pain, since he couldn’t get enough leverage to really hurt me. Then it hit me like sticking my finger in an electrical socket that he wanted to get a rise out of me. That was his single purpose. He would only be satisfied when he heard me scream loud enough. I realized I didn’t need to give him what he wanted, and I ceased at once both my protests and my seeking to avoid his paddling. I simply relaxed in his grasp, and the surprise at my lack of resistance made him almost supportive as he sought to keep me upright even as he continued to try to spank me. But now as I gave no satisfying howls, it was so dispiriting to him, he stopped hitting me. He let me go, leaving us breathless the two of us. But he wasn’t through with me, not yet. He still wanted to get to me. Only if he hurt me, could his own rage and impotence be relieved. That’s what I saw so terribly clearly. He thundered across the room to our precious tin and cardboard dollhouse and began systematically dismantling it and throwing the pieces in the waste basket. I felt immediately that I had no choice but to join him. Not only that, I felt I had to laugh uproariously, even while we trashed my favorite plaything that I had lavished both hours of my time and all my pocket money on.

Well, this did the trick. Seeing as he couldn’t hurt me, he couldn’t provoke me to tears or outrage, but only encouraged me to laugh merrily, he abruptly stopped what he was doing. He glared at me with murderous rage in his red eyes, and then, clearly fearful of what he might just be capable of if he didn’t leave me right then and there, he pounded out of the room and left me to my triumph. I fully admit I cheered, and jeered. I felt more victorious than if I had beaten my brother to a pulp! (See how gentle and generous I was?) I had won, and he could do NOTHING against me; he could not hurt me, no matter how hard he tried, not physically, not emotionally. He had tried and failed, and therefore I was the winner, and I gloated in my victory over the tyrant of 839A Finchley Road.

Did I pay a price for this? And why did I automatically resort to such behavior, rather than submitting to a "mere" spanking? Was I programmed by my genes to respond this way? It certainly felt innate, not learned, not conditioned. No one had ever taught me to react this way to abuse before. I just happened upon it, and understood that it was the only way to successfully beat him at his own game.

I wrote in 2004: I suspect that something innate in me leads me to see the world in black and white, in terms of absolute good and evil instead of shades of grey. I have never not been prone to such a division of labor, even when I myself am partitioned off into the all-bad category, as I usually am. Why do some people see the gradations in things, in events and people, and others, like me, see only the stark contrasts, and find it so difficult to accommodate to the idea of in-betweens and relativeness? Have I merely learned to be this way, or is it, as it feels, a natural native response that I must constantly keep in check?

I saw no other option that day but to destroy my dollhouse with my father. I could have sobbed or objected, or simply mutely watched as he went about his murderous business. But no, I felt obliged to join in, to destroy my own things myself, and to actually feel cheerful doing so, albeit somewhat hysterically so. And to this day I often choose to hurt myself if I perceive that someone else wants to hurt me. I’ll do it first, I reason, so I can control it and it won’t hurt so much. No one can hurt me as much as I hurt myself, I know that. NO ONE would dream of burning me with multiple cigarettes over large patches of skin. No one would slash my wrists or cut at my face just to get back at me. Yet, with or without the help of accompanying command hallucinations, I do so, and do so frequently. Or at least have done so many many times, each time without even considering other options, or simply waiting for the feeling to pass. It never occurs to me to think about what the scars will look like, not even on my face. I just lash out, and obey both the voices and my own self-poisoning hatred.

I write in 2008: I don't know why I said that I see in B & W except that I was told in some hospital that I saw in B & W and I was unable to think about it for myself at the time. In fact, I see the shades of gray (actually in millions of colors, but I won't quibble) quite well...It is others who wish to put me into either the B or W camps who have trouble with gradations. I don't think that it suggests a tendency to B & W thinking, the fact that one, say, has deliberately, that is to say, usually under orders -- burned one's face or arms. It merely suggests self-hatred among other things. But you can hate yourself and still see the rest of the world in shades of grey, I assure you.

It occurs to me that I say: "No one would dream of doing X and Y to me" but of course, that is just the world's expression I am using. As I use it, I mean to imply the very opposite: The problem is precisely that they might indeed do it to me, which is why I must do it to myself first...

How does all this fit into my having developed schizophrenia? The fact that I learned to destroy my own dollhouse and laugh while I did so seems significant insofar as it is not how most children would have reacted. I forgot how to feel, or how I was allowed to feel about the world that happened around me, and how I was allowed to react to it. They were making all these Rules for me at any and every minute that kept me on my toes...The Rules were the bane of my existence. I couldn't open or pass through a strange door unless a Rule had been made and then been broken on my behalf. This is still difficult. The Rules govern a great deal, though I am not supposed to talk about them anymore or give them any credence, according to Dr O. She believes I am cured, and if I do not talk to her about the voices or the Rules, she will continue to believe so, and will eventually allow me to get off the pills. Which is what I am stumping for. So that is why I will not tell anyone about them.

But there are all sorts of rules, like: if anything becomes too precious, give it away. Or answers to all sorts of questions like, if a cholera epidemic comes, should I offer my blood? (My blood is immune to cholera, They tell me); smaller or precise questions too, but larger ones like: what doors can I pass through, yes, but also what large spaces can I cross, where may I speak and how loudly can I say my name (if at all); how much water may I use; how much space is my body allowed to take up; Can I use a paper towel? Can I use a paper napkin? Must I re-use every yogurt container again... Other Rules: Do not throw away any reuseable food container. Do not look at other people unless they look at you first. But look at other people as soon as they look at you.

You know, this is so good: Get the eyes right, in other words. That is hard, but it is essential if you want to be normal. Believe me. It took me forever to learn to look at people. I still can't always do it, and some people I still have trouble with regularly or I just fudge it. But I can in general not look down now when I'm with people, so you see how far I've come. So some of the Rules are "right on" Rules...Just some of them aren't and I'm hard pressed to know which are good and which are harmful...And if they are not helpful as a lot then they really do me no good as a lot and I'm back where I started, just with Voices and Rules (no news, no news).

Delusion or Fact?

I have been told that the following concept is a delusion. Since I wrote about it five years ago, I have had 20 ECT sessions and many many antibiotics... I no longer worry about it as much. However, I do want to re-post it, as well as following discussions, as it might be illuminating for others who are still in the throes of similar schizophrenic delusions.

TITLE: Grey Crinkled Paper
DATE: 12/30/2003 11:51:41 PM

I first experienced Grey Crinkled Paper (GCP) when I was 16 or so, when my hands turned blue and ballooned to 100x their normal size. I realized suddenly that I was in the corner of my room, up near the ceiling, and that GCP was the key to everything. It came to me, as a message from some divine source, that GCP will solve everything that has troubled the world since time immemorial, and that I am to play a role in bringing it to fruition. First, this process has to begin in the Middle East, but just where was unspecified. Then it will spread outwards in a spiral until the whole world is taken in and all ascend to Atman. How this should take place resembles the old telephone game that children play, where one person whispers a sentence into the next person’s ear, and that person whispers what she hears, or thinks she hears, to the next, and so on. In the game, sense becomes nonsense; what is a comprehensible sentence eventually turns into gibberish. But with GCP this is reversed: first Grey Crinkled Paper is to be translated into Arabic or Farsi, then 22 speakers of other languages have to translate it, sequentially, until the last of them, who must be a non-native speaker of English so nothing in the purity of the process is corrupted, translates the result back into English, this final phrase revealing the true meaning of GCP in a way none has ever perceived before. What was clear then and is so now is that this will usher in the end of the world as we know it, yes, but in a way that brings light and joy to all. What is also important here, I understood even at 16, is that if I rejected my role in bringing GCP to the world, if I ran away from it, I would be converting myself from savior to Satan and would be responsible for all the human suffering that proceeded from this decision, which of course would be immense.

Since then, at different times, I have both accepted and rejected my role. Nothing is yet irreversible, but the time draws near, as is obvious from Israel’s wall and the war in Iraq and the Iranian earthquake, when I shall have to decide one way or another or suffer the consequences.

Tuesday, December 23, 2008

Winter Stress

This is an up-to-date entry, which I will add from time to time, just to keep this blog " interesting" So it is not just a rehashing of the old Wagblog but an ongoing "live"blog as well.

That said, I am -- unbeknownst to almost everyone in my life but one on-line friend and my father, who may discount it -- under a lot of stress right now. I have to visit an elderly friend two to three times a week and make sure he is not alone too much and then see my best friend, Joe, in the hospital, where he lives on a ventilator, paralyzed with Lou Gehrig's disease. I enjoy these visits but they are also time consuming and they take me away from my apartment, which is where I like to hole up and be by myself, doing artwork or writing. Now I have a lot less time for that, which is a source of stress too. But the biggest stress is having gained about 10 pounds.

Having finally lost a lot of Zyprexa-induced poundage, I have a horror of getting fat again, so weight gain is a very "fraught" issue for me, especially because the voices go haywire when I am very upset and start in on me. "Lardass! Fatso! Pig!" they'll scream, and They tell me I'll always be fat and never lose the weight...and then if I don't lose it fast, They start, well, getting dangerous to me. Their orders can be very specific, and I do not want to go into most of them here, only to say that once there was a man in the BioHazard sign, a red, dancing man who told me to immolate myself in a very very detailed, specific way. That time I had to have ECT just to end that cycle. I still don't know if ECT worked or if it just killed the brain cells enough that I forgot about him...But to this day the biohazard sign still gives me the heebie jeebies...

As to the weight gain, I feel guilty, so I feel I can't speak of it out loud. I feel that it is my fault, so who am I to moan and groan? It's my bed, so I must lie in it, right? A better person would not be in this mess...So grin and bear it but let no one know that it matters, especially because they will always say something to me anyway. I don't know why everyone always feels they have a right to mention the fact that I have gained weight! I would NEVER say such a thing to them or to ANY other person. IN fact I never comment on any other person's body...Yet it seems that everyone has a proprietary interest in mine, and feels that they have the right and duty to comment on it, even to the point of commenting on what I must weigh. So you can imagine how painful it is for me to be seen in public...

They comment though, those people who hate me, I can understand why they do, they have no reason to remain civil. They are supposed to keep me in line. My doc told me, I am supposed to remember this, but I keep forgetting it, that They are me, but I do not think so, I think They are They, frankly...No, They are me, they are me, they are me. I make the Rules. But I still feel guilty and fat and wrong wrong wrong wrong...

The problem is that I had to bake cookies twice, actually 6 times for 2 parties this Christmas. I made 3 different kinds for each party, and so I had 6 different baking sessions. Now I usually eat very healthily, and I do not ordinarily enjoy cookies, but homemade and mine, I do. So I have been eating quite a few, hence the added pounds. But that is whence the guilt as well. It is MY fault and so I have no leg to stand on but my own two crooked ones, and they must do. Now I dread going to my own family Christmas party with the final batch of cookies. Though the platter will bring much cheer, I must be seen to carry them inside. I dread this so much that I feel sick... In fact, I have been physically ill for the past three days as if my body were trying to give me an excuse not to go. Alas, I must. I promised to bring along four "orphans" as well: three other middle-agers and one elderly without family to the party of the one with a family still. I do not begrudge them their Christmas, only wish I did not have to attend it myself. I'm sorry, I'm simply that awful!

Keep Your Mind Lively

Originally dated 12/28/2003 but just as relevant for now so I will keep this as is, and refer all visitors to first post at bottom or to my About me post when I finish it, as a explanation.

Yesterday I had an enlightening conversation with my friend Joe, who lives downstairs from me in this beautiful 250-unit Section 8 building in Connecticut, which I call, almost without joking, the Wethersfield Hilton. Joe, a retired engineer, is refreshing his memory of high school math so he can tutor remedial college students and high schoolers, and one thing led to another until we got to talking about how hard algebra had always been for me to conceptualize, that is, to imagine or translate into anything real. I did well in high school geometry, true, but mostly because it was based on visual things, and on axioms that made sense, or at least what followed from them made sense if you accepted their Euclidian validity. But algebra was another matter altogether. How did one understand in any meaningful way that an equation is like a sentence in any language, that it means, or states, a certain curve or line plotted on the X and Y axes? Joe gets it, understands this, in the same way that I know how to spot a troublesome sentence or fix someone’s shoddy writing. But I absolutely never got algebra. I may not have flunked, but I certainly only passed perforce of brute memorization, which in the end went for naught, as I hadn’t the faintest glimmer of understanding what I was forcing down my craw. I only did it because it was required, remaining stubbornly blind, deaf and dumb to any meaning, until last night when Joe’s explanation illumined matters in a way that had eluded me for thirty years. I am still only a novice, of course, but it truly is fascinating to see how mathematics is a real language, and can be used as such, to state things about reality with both precision and beauty.

Which brings me to the core of the matter, which is how, despite this illness, to keep one’s mind alive and active when sometimes, perhaps even most of the time, you might prefer to sit numbly in front of the tube or vegetate next to a talk radio station. I have certainly watched my share of TV, though fears and paranoia about the radio have prevented me from becoming an audio afficionada, and even now there are times I must force myself to get up from my bed, go into the living room, and pick up a book. But in good times this is relatively easy, and I’ve found I love learning just about anything in fact. Learning a new skill or acquiring a new interest is essential for everyone as she ages, but most especially for those of us who suffer from mental illness, a disease that can so easily destroy all joy and interest in living unless we force ourselves to find it somewhere, anywhere at all.

The great love of my life apart from writing, and probably what saved me from certain mental deterioration, was field botany. Identifying wild plants, that is, knowing helianthus from heliotrope and both from false Hellebore got me out of my room and into the outdoors, which is therapeutic every single time, but it also awakened in me an extraordinary appreciation for the natural world, and gave me eyes to see what before then had been no more than a blurred mass of green, undistinguished by any details greater than grass trees weed. My most recent passion has been for tropical fish, and marine animals of all kinds. True, I acquired the interest while manic, and that undoubtedly helped fuel it, but while my intense ardor has cooled somewhat from that too-high pitch, I still love immersing myself in books about the ocean and videos about marine life. And when we, that is, Joe and I, went at last to Mystic Aquarium, I was a pig in excrement. Once I saw the weirdly lovely, white Beluga whales I completely forgot all about how long the drive had been, how tired I would soon become, or how scary it was for me to be out in public without the safety of my apartment within easy walking distance. My interest in things outside me, hard won or more easily acquired, is what has brought me back to reality every time, not solving delusions or resolving hallucinations or even accepting medication (which I do).

There is a life that goes on beyond the confines of one’s head. The most important thing when you are faced with a set-back or relapse, is to force yourself to get past the difficulties, the anguish, and open your eyes and see what is out there.

Who Knew, Who knew?

This blog entry is dated, obviously but is rather prescient as well, so I will include it, though it may have little to do with schizophrenia in the end.

TITLE: Bits and Pieces
DATE: 12/26/2003 06:18:34 PM

I am stuck in my writing of SOLO FOR TWO ( "DIVIDED MINDS"), mostly because it seems so disorganized and lacking in any coherent structure. Partly this is due to our not being able to coordinate our different parts of the story so far, and having no editorial input, despite our editor at St Martin’s, D, and her promise to stay in close contact with us as we continued to finish the book. In fact, we never heard from her after the first chapter, which she liked but never returned or edited, and it has been almost a year since then. Does this have to do with the fact that she moved to the west coast? I have not had a good experience with editors who come from CA, and I fear that D, now living in Oregon, may have been infected by CA’s sun-dazed, surf’s up, lackadaisical attitudes! (No offense to CA dwellers, I am only jesting and truly love my Left Coast friends, one and all.)

Lynnie plans to visit after Christmas, during which time we may do an interview/profile for Psychology Today, which is putting together an issue on “nature versus nurture” and has expressed an interest in being “flies on the wall” during our next working get-together.

Everybody is celebrating the capture of Saddam Hussein, the worst despot of the second half of the 20th century. And we’re all congratulating ourselves, as if we weren’t ourselves guilty not only for supporting his murderous campaigns for years or at least closing our eyes to those we might not want to see, but actually supplying him with ALL the biological and chemical weapons and nuclear components which we have accused him of developing into WMD. What a load of hooey! As far as I’m concerned, we are nothing but a bunch of hypocrites. It makes me sick to hear how wonderful we are for capturing this monster, and nothing at all about our deep complicity in his crimes, nothing about our complete abstention from objecting when Iranians or Kurds were gassed with our chemicals or Iraqis who dissented were disappeared. What did we care, so long as our oil supply lines went on flowing uninterrupted? Oh, I could go on and on, being the lefty that I proudly am, but I suppose my political passions have no place in a blog concerned with the writing of a book on mental illness. But if anything makes me ill, mentally sick at heart, it is this sort of self-congratulatory amnesia and/or ignorance. That is all I’m going to say about it for now, otherwise I’d start in on Walmart.

Except that I'm going to append a short lefty political poem I just wrote...Hah!


By Pamela Spiro Wagner

Your father, George W, said he stood for
All those 1000s of pinpoints of light
As his son you incessantly prosecute war
Do you think that your star shines so bright?

If you wanted, George Junior, to do anything
You *could* end world famine and hunger
Yet the rich you make richer than Croesus the king
And the poor will not take it much longer

Your invading campaigns haven’t made Iraq healthy
To the Afgans you’ve only brought grief
You’ve stolen from poor peoples, made your friends wealthy
Sir, to us, you behave like a thief

You’re the president, George, though you weren’t a fair winner
You’ve said you’re a good man and true
You claim you’ve reformed and no longer a sinner
But what when the war bill comes due?

The people, George, know that you’re *not* a good man,
that the White House deserves a new resident,
So in next year’s elections we’ll do all we can
To select someone else as our President.

Experience of schizophrenia

I am in the process of reconstructing the old Wagblog here, but cutting out the inessentials. So I will start with the second entry, making only those edits necessary for clarity. Otherwise it has been left almost entirely as it was, starting back in 12/03 through 3/2008.

SELECTION FROM THE EPILOGUE TO “SOLO FOR TWO” (later DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia, St Martin’s Press 2005)

What follows is a draft of part of the epilogue to our book, not as it finally came out though:

As I read Lynnie’s description of my first hospitalizations in the fall of 2003, which ECT during the second has largely erased from memory, I was by turns horrified and ashamed-disrobing and racing through the hospital ward in my birthday suit, moving my bowels on the floor because my bathroom door wasn’t unlocked quickly enough, how is that possible?-and saddened to have caused someone who loves me so much anguish. It is not easy to be psychotic, of course; it is a horrible, frightening and debilitating condition, the after-effects of which can last for months, if ever they are gotten over entirely. But I had never understood quite so viscerally how difficult it was to be the largely helpless sister of someone who is psychotic. Heedless of my effect on others-nursing staff, friends, family-I lived inside the nightmarish fragments of a time and country beyond understanding, the shattered-glass nano-seconds of an everlasting present that had no connection to shared time or to anything or anyone. I was literally in a world of my own. Small, terrifying and constricted as that world was, it was all I knew. I don’t remember the whys and wherefores of my raging and outrageous behavior in September after I came out of my catatonia, and due to ECT I recall even less about my second hospitalization the following month. Perhaps this is for the best; I suspect I did not behave like the kind of person I want to be seen as, even perhaps usually am, when not in the throes of madness.

But madness it was, as anachronistic and moodily romantic as that term always strikes me. What else would you call it? I had no idea what I was doing or why, I acted solely upon impulse, delusion and hallucination, and for a long time I cared little whether or not anything I did had any rational basis or the slightest foundation in a reality that other people participated in. In catatonia, I abdicated living, not by choice it is true, but nevertheless, being for that time effectively lifeless. And I came close to relinquishing life altogether in my compulsion-governed by the command hallucinations of the Biohazmat Man-to immolate myself in atonement for heinous but in the end imaginary crimes. My sin was in being, and to atone I had to un-be, to burn in my own version of hell, literally to give myself over to the flames.

Schizophrenia is hell, that is obvious to anyone who has had to deal with a psychotic person. It’s a place where strangeness lurks around every corner and terrors reside within every shadow, a netherworld where nothing works and the ordinary rules of life don’t apply. But this hell is not just for the immediate victim, as Lynnie’s account makes so painfully clear. Though in the end no one is to blame, my experience with mental illness has torn my whole family apart in ways no one who knew the golden girl I once was could ever have foreseen. Abundantly talented and intelligent, once seemingly destined for great things, I have lost nearly everything I once had to this horrendous disease. Though my siblings are unerringly supportive and caring, none of them like to spend much time with me. My mother wavers between loving encouragement and avoidance of the painful reality of what my life has devolved into. And to this day my father, in his steadfast state of denial and his fear of the truth, refuses to talk to or even be in the same room with me. I understand him, I understand all of them, and therefore I forgive him, but I can’t say this stops me from feeling the occasional spasm of rage when I hear of him referring to his three children when he has four. Surely, if I am not in fact Satan, I did not willfully choose to become ill, so this continuing rejection of me, his firstborn, has to be undeserved and profoundly unjustified. If there is any, the one small comfort I have is in the knowledge that whether he knows it or not, this is as great a loss for him as it is for me.

I have always been an outdoors person. In the past, I spent many weeks camping with my family and endless hours playing in the weeds and fields as a child. Later on, smitten by wildflowers, I became an amateur naturalist. Starting in my early 20s and continuing well into my 40s, I spent days upon days wandering the woods in my passion for field botany. A tick bite, at the time, seemed a minor, almost insignificant irritation. Then, after having been stable for four years on a low dose of Zyprexa, came that disastrous Y2K episode, filled with bizarre symptoms like extraordinarily vivid visual hallucinations and an extreme startling reaction to all stimuli, which exploded my world to smithereens. Finally in the fall of 2000, with a relatively recent history of both tick bite and rash (in 1998, followed by several serious but suspiciously indeterminate illnesses), I was finally diagnosed with neurological Lyme disease. Started on antibiotics, I improved a little. Still, the damage was done and the relapses did not cease even then. But both Lynnie and my Lyme-specializing neurologist have left open the question whether my schizophrenia and/or narcolepsy might have been induced years ago by long-standing, undiagnosed and untreated Lyme, acquired in adolescence or even before. I myself cannot say, and the issue may be moot, since nothing has helped me to any greater degree than ECT and anti-psychotic drugs, Lyme or no.

However, in her practice, my sister has seen Lyme disease cause any number of untreatable psychiatric conditions that do resolve with the use of antibiotics, and so it behooves me to keep an open mind to the possibility that a spirochete, specifically the Lyme bacteria, Borrelia burgdorferi, has been the agent of all my troubles, leaving in its wake permanent brain damage and a legacy of severe mental illness.