Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. "Recovery is a process." You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?
Well, the first thing I want to say is that I would date my "recovery" process from, um, 1996 when I first started taking Zyprexa and experienced an awakening of the nearly proverbial kind (in a manner of speaking). "Awakening" of the kind first described by those taking Clozaril/clozapine. "Awakening" tantamount to those seen in the movie starring Robin Williams, though of course nothing really like those, since that illness was encephalitis lethargica and the drug was L-dopa. I felt that life had somehow suddenly "come to life" that the lights had come on in my brain. I had never felt anything like it before. One day I was dull and listless and unable to do more than read a poem on one page. Then next day, there I was, reading the entire New York Times, and wanting more. I could not believe how hungry I was to read and learn. And how much I could suddenly do so.
But would I really date my recovery from then? Hmm, no actually not really. After a few years of marginal, but real stability in the sense that I remained "hospital-free" I experienced a major psychotic break at the cusp of the new millennium, was hospitalized for three months in almost constant psychosis and for the next four and a half years spent nearly half of every year in the hospital.
And it was not only that I was hospitalized, but that in every hospital I was sent to I was so out of control that I was placed in 4-point restraints time and again, injected, secluded, and subject to any manner of brutality by hospital staff who did not understand or want to take the time to treat me. What they saw as willful "misbehavior" was always, always, always paranoia so profound that I dared not even state what I believed, lest it end worse for me. The fact is, I was controlled by a delusion that said, if a person is in your house, planning to kill you but acts as if he is a friend, then the last thing you should do is let him know that YOU know of his intentions: once he knows you know, the gig is up and there will be no escape...I do not know if you can follow my reasoning here, but in my paranoia I could not even speak to the staff at those hospitals of my fear because if I did, they would drop all their pretenses of being merely hospital staff...
Be that as it may (I have written many times of my brutal treatment in hospitals and will post them here in the days to come, for those who have not seen them at Wagblog), no, I would not date my recovery until about 2005, coinciding with the publication of the book I co-authored with my twin sister, DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia.
Somehow, around that time -- I had been off the Zyprexa for about a year and a half, and on Abilify and Geodon, miracle drugs in their own rights, but not the same as Zyprexa, just without the same devastating weight gain and sedation -- I managed a self-transformation, physically at least, to such an extent that in this building where I had lived for 10 years at the time, and where many people know one another by sight at least, I began getting asked such things as, "When did you move in?" Or, "Are you a newcomer?"
So I looked different, and I was on a book tour and learning new things by the minute -- how to travel and do public speaking and eat in hotels and so forth...And it was heady rather than frightening for the most part, thought of course it was exhausting and that brought its own dangers. But for 6 months or more of the book engagements I did wonderfully.
Nevertheless, even after the "acute" book tour was over, the hospitalizations never ended. Neither did the "out of control" episodes, or I regret to say, the brutality, not until the last stay in Dec/January at a hospital in eastern Connecticut, where they have decided to eschew violence as a policy.
Even so, I would never not say I was in recovery. Of course I am, despite the hospitalizations and repeated bouts of psychosis! So what is this "thing" recovery anyway? And if it is a process, what is the end result?
Usually when anyone else but someone with a psychiatric diagnosis speaks of recovery they mean, full-out cure. Let's not kid ourselves. When you recover from pneumonia, you get better, you do not have pneumonia any longer. When you recover from the flu, you are cured. When you recover from a broken leg, ditto. Yes, there may be residual damage, if you have a heart attack say, or pneumonia, but you do not still have the process itself going on, or you would not call yourself recovered. Rarely do people say that they are chronically IN recovery from anything but either a psychiatric illness or poorly controlled substance usage. But man, do we! The problem with this whale is that like Moby Dick it can lead you out to sea, capsize your boat and abandon you, floundering. What use it is to say, you are in recovery, if you remain miserable, despite all the medications stabilizing you so you are not "in the hospital" or "utilizing resources"?
One of the saddest things about schizophrenia is how little we are satisfied with, how small our lives can become without our even noticing it. Back in the 1980s and early 90s, when I was on Prolixin, I simply had no idea that my life would or even could expand so, that it could take in so much more than the four walls of my smoky room, and the coffee and cigarettes that I occupied my day with. Still, even then, I wrote an "first person article for the Schizophrenia Bulletin relating how much happier I was being on Prolixin than "before" and how much fuller my life was, how much more fulfilling etc. I had no idea how little I was living, because i had nothing to compare it to. Literally.
So what is recovery? Oh, gag me with a spoon! I hate that word. It is meaningless, since clearly I have not recovered from any illness, not in the sense that I 1) do not need medication 2) do not need the hospital from time to time 3) do not need a doctor's care frequently. So I am going to throw it away with the bathwater and say that I do not give a ssastar (read it backwards) about recovery, in or out, only that on Abilify and Geodon, and Latuda during crises, as well as several other medications for stability as well, I can do art, write and feel reasonably well much of the time.
But the important thing is that I am productive and do not feel strait-jacketed either by illness or by medication or by others interfering and telling me that I should or should not do or take or be this or that. If nothing else, the best thing these days, aside from having discovered that I can do art (which I took up for the very first time in December 2007) is finding that I have a little more confidence in myself to say to people, I am okay, and I will do these things my way because it is my life not yours and I know how I feel better than you do.
Thursday, May 26, 2011
Friday, May 20, 2011
Latuda: Brief Personal Review
Note: Please check out my other later medication posts as my feelings about Latuda have changed...
I have linked to the official Latuda site above. I cannot vouch for more information than what was provided me there and in the original package insert.
Two weeks ago I had a psychotic break, despite taking both Abilify and Geodon for schizophrenia and Lamictal for mood symptoms.
To avoid a hospitalization, my doctor and I usually add Zyprexa, but I refused it this time, hating the rapid weight gain and overwhelming sedation, though it is otherwise a wonderful drug for me. This time, though somewhat dubious about being a "guinea pig," I agreed to try Latuda. Previously I had tried both Fanapt and Saphris with disastrous results. The latter in particular reduced me to complete anhedonia and apathy. I did nothing at all but sit in a chair and smoke, which was even worse than before, when at least I recognized that things were not right, that I did love to do art and writing, even though I could not do them at the time.
So on Friday, after an emergency appointment, I went home with a prescription for 40mg Latuda, which was upped to 80mg the next day.
Well, within about 4-5 days the voices screaming at me were gone, my thoughts were much clearer, my energy higher, my mood brighter. It seems impossible, but Latuda might be the medication I have long been looking for: Zyprexa-without-adverse-side-effects, which is to say, no weight gain and no extreme sedation.
Moreover, I wake in the morning eager to rise and meet whatever the day brings. To me, as an artist, poet and author this is so important. I haven't felt so much better or as hopeful in a very long while.
I will say that the one huge benefit of Zyprexa, my first real miracle drug, my "awakening drug" so to speak, was that I was able to read, to concentrate and think in a way that nothing has ever matched, no, not even Latuda. And though I miss this even now, I will have to wait for the day when the perfect drug comes out to permit all my cognitive capacities to function, not just some at a time under the influence of one drug or another. Until then, I prefer doing writing and art, under the influence of what I call the "output drugs" of Abilify and Geodon, (and Latuda) to the input drug of Zyprexa (on which I feed both on books and on food).
Both Abilify and Latuda although they do not help me read, do keep my mind alert and alive, allowing me to be creative, not drugged up. They are as well more than weight neutral, and in fact help me lose the Zyprexa-induced poundage. The one problem with Abilify is that at first it made me extremely irritable, even angry, until we combined it with Geodon. Now I never take the one without the other. Latuda when added to the mix, seems not to cause any additional problem, it just quickly alleviated the psychosis, which the other 2 meds did not cover.
I wanted to report these things here because it is so important for people taking anti-psychotic drugs, many with terrible side effects, to know that there may be another drug out there that might work for them. There is never a guarantee as we all know. Those that work for a certain person, might wreak havoc for another. Some swear for instance by Risperdal, and it only and consistently puts me into complete catatonia. Others hate Zyprexa and would never call anything about it miracle-working...
If anyone reading this has had experience with any of the drugs mentioned in this post and wishes to comment, I would be interested to hear from you.
I have linked to the official Latuda site above. I cannot vouch for more information than what was provided me there and in the original package insert.
Two weeks ago I had a psychotic break, despite taking both Abilify and Geodon for schizophrenia and Lamictal for mood symptoms.
To avoid a hospitalization, my doctor and I usually add Zyprexa, but I refused it this time, hating the rapid weight gain and overwhelming sedation, though it is otherwise a wonderful drug for me. This time, though somewhat dubious about being a "guinea pig," I agreed to try Latuda. Previously I had tried both Fanapt and Saphris with disastrous results. The latter in particular reduced me to complete anhedonia and apathy. I did nothing at all but sit in a chair and smoke, which was even worse than before, when at least I recognized that things were not right, that I did love to do art and writing, even though I could not do them at the time.
So on Friday, after an emergency appointment, I went home with a prescription for 40mg Latuda, which was upped to 80mg the next day.
Well, within about 4-5 days the voices screaming at me were gone, my thoughts were much clearer, my energy higher, my mood brighter. It seems impossible, but Latuda might be the medication I have long been looking for: Zyprexa-without-adverse-side-effects, which is to say, no weight gain and no extreme sedation.
Moreover, I wake in the morning eager to rise and meet whatever the day brings. To me, as an artist, poet and author this is so important. I haven't felt so much better or as hopeful in a very long while.
I will say that the one huge benefit of Zyprexa, my first real miracle drug, my "awakening drug" so to speak, was that I was able to read, to concentrate and think in a way that nothing has ever matched, no, not even Latuda. And though I miss this even now, I will have to wait for the day when the perfect drug comes out to permit all my cognitive capacities to function, not just some at a time under the influence of one drug or another. Until then, I prefer doing writing and art, under the influence of what I call the "output drugs" of Abilify and Geodon, (and Latuda) to the input drug of Zyprexa (on which I feed both on books and on food).
Both Abilify and Latuda although they do not help me read, do keep my mind alert and alive, allowing me to be creative, not drugged up. They are as well more than weight neutral, and in fact help me lose the Zyprexa-induced poundage. The one problem with Abilify is that at first it made me extremely irritable, even angry, until we combined it with Geodon. Now I never take the one without the other. Latuda when added to the mix, seems not to cause any additional problem, it just quickly alleviated the psychosis, which the other 2 meds did not cover.
I wanted to report these things here because it is so important for people taking anti-psychotic drugs, many with terrible side effects, to know that there may be another drug out there that might work for them. There is never a guarantee as we all know. Those that work for a certain person, might wreak havoc for another. Some swear for instance by Risperdal, and it only and consistently puts me into complete catatonia. Others hate Zyprexa and would never call anything about it miracle-working...
If anyone reading this has had experience with any of the drugs mentioned in this post and wishes to comment, I would be interested to hear from you.
Tuesday, April 7, 2009
Love, Lovability and Jealousy
Most people assume the problem causing jealousy is coming from outside them: she is trying to take him away from me; he wanted that prize and now she's won it and is lording it over him trying to hurt him; how come he can afford that new car and I can't?
But the problems are the feelings generated inside us. If we trusted that a person truly loved us and that all would work out to the best end possible for all concerned, if we trusted that we were fundamentally lovable and loved ourselves unconditionally, none of it would happen. We would not need to feel jealous. Your girl or your guy might still be interested in someone else, but it would not threaten your sense of self-worth or feeling that you are loved and lovable. So jealousy would not be a problem, you could just be happy that they'd found someone else to love along with loving you, since there's no limit to the amount of love there is in the world or in a person. Likewise they would be happy for you if you found another. No one would abandon you, because they'd still love you, they'd just love twp people, and how wonderful that they love two people, let them love ten!
I know it sounds either impossible or too gag-me-with-a-spoon sentimental, but it works for me, or sounds right to me, even though I have never accomplished it. Why not? Because so far, and I don't know why, perhaps because my dopamine- and serotonin-altering drugs reduce my drive, so far I have had no particular feelings of attachment to people, so I have not been bothered by jealousy of that sort. (Yes, I would perhaps be jealous of someone were they to get a prize I coveted, for my writing say, but I don't know how deep it would cut...due to the dampening effects of the selfsame drugs.) At this point, though, I fear I cannot love at all. Can one love without wanting physical contact? I really like a lot of people, male and female, but I am terribly afraid they will touch me -- physically --in some way that demands response. I can give a casual hug, finally, and shake hands. And one friend who is trained as a massage therapist in CA has given me an abbreviated back massage...But I otherwise shy from contact with other people. If others demand it, I throw their friendships away. So I've always felt I was unable to love...
I cannot approach jealousy, then, from the love point of view, not understanding it properly. But what about from the work and achievement aspect. If you feel truly lovable, does it matter who wins a prize? You'd know the value of your work and the value of yourself and the latter wouldn't depend on the former. You'd be certain you were loved and that you were valuable, that your work was good, whether you won the prize or not. Some people only work in order to win that prize because it all comes down to impressing others to elicit love from them; people like that don't feel fundamentally lovable otherwise than with that sort of proof. If they did, so many bad feelings would drop away...But we need to feel, well, not just lovable, but to love ourselves, first of all, we need to unconditionally simply accept ourselves as we are, carbuncles, corns and every other imperfection included. Once we accept outselves without precondition, and without condition, that is to say, without saying at any time, I love you, except, or unless...it is hard to allow another person's bad opinion to make us feel bad. If I feel I am okay fundamentally, why should someone else saying I'm "half-baked" or mediocre etc matter to me? Why should my merely losing a contest...which is after all usually no more than someone else's opinion of my work (my writing or art) undermine me or make me jealous? If I care about myself, and know my value, then I can realistically appraise my level of expertise and how far I have come as writer and artist, and know "how good I am" in whatever I do. Then I do not need the validation of a prize, and when I get one or when I do not, it need never change my feelings or opinions of myself or my work.
You have to love yourself, because you are going to make mistakes and you will need to be able to forgive yourself. You have to know that you are lovable, fundamentally, because you can love yourself. No matter how bad a mistake you make, no matter how thoughtless you accidentally are, no matter how mean your thoughts and words might sometimes be, that you know, beyond a doubt, the YOU are lovable despite all of that. If only we knew that, all of us, maybe we'd feel less insecure in the world. I know I still obsess about being evil and taking up too much space in the world. And I feel incredibly hate-able, despite all that I have said above. I feel like any Force or Energy or Essence or Spirit or God that might have set us spinning is disgusted by me and will soon teach me a terrible lesson, revenge-time, you know. I have all these unlovable-me feelings that run underneath all my fine words and undermine all I do. But can you imagine if I did not?
Did any of you see the movie: WHAT THE BLEEP DO WE KNOW? If not, you absolutely Must. When you see those photos of water, plain water, vs water that has been prayed over, water that has been told, I love you, and water that has been told, You make me sick, I hate you! It will break your heart but in a good way. The man -- his comment to Marlee Matlin then means everything. The movie is part documentary, part movie-movie, part weirdness animation, but I loved it and so far so has everyone I know who has seen it. It might give you some ideas to think about when jealousy and bad feelings and feelings of unlovabity hit you, too.
But the problems are the feelings generated inside us. If we trusted that a person truly loved us and that all would work out to the best end possible for all concerned, if we trusted that we were fundamentally lovable and loved ourselves unconditionally, none of it would happen. We would not need to feel jealous. Your girl or your guy might still be interested in someone else, but it would not threaten your sense of self-worth or feeling that you are loved and lovable. So jealousy would not be a problem, you could just be happy that they'd found someone else to love along with loving you, since there's no limit to the amount of love there is in the world or in a person. Likewise they would be happy for you if you found another. No one would abandon you, because they'd still love you, they'd just love twp people, and how wonderful that they love two people, let them love ten!
I know it sounds either impossible or too gag-me-with-a-spoon sentimental, but it works for me, or sounds right to me, even though I have never accomplished it. Why not? Because so far, and I don't know why, perhaps because my dopamine- and serotonin-altering drugs reduce my drive, so far I have had no particular feelings of attachment to people, so I have not been bothered by jealousy of that sort. (Yes, I would perhaps be jealous of someone were they to get a prize I coveted, for my writing say, but I don't know how deep it would cut...due to the dampening effects of the selfsame drugs.) At this point, though, I fear I cannot love at all. Can one love without wanting physical contact? I really like a lot of people, male and female, but I am terribly afraid they will touch me -- physically --in some way that demands response. I can give a casual hug, finally, and shake hands. And one friend who is trained as a massage therapist in CA has given me an abbreviated back massage...But I otherwise shy from contact with other people. If others demand it, I throw their friendships away. So I've always felt I was unable to love...
I cannot approach jealousy, then, from the love point of view, not understanding it properly. But what about from the work and achievement aspect. If you feel truly lovable, does it matter who wins a prize? You'd know the value of your work and the value of yourself and the latter wouldn't depend on the former. You'd be certain you were loved and that you were valuable, that your work was good, whether you won the prize or not. Some people only work in order to win that prize because it all comes down to impressing others to elicit love from them; people like that don't feel fundamentally lovable otherwise than with that sort of proof. If they did, so many bad feelings would drop away...But we need to feel, well, not just lovable, but to love ourselves, first of all, we need to unconditionally simply accept ourselves as we are, carbuncles, corns and every other imperfection included. Once we accept outselves without precondition, and without condition, that is to say, without saying at any time, I love you, except, or unless...it is hard to allow another person's bad opinion to make us feel bad. If I feel I am okay fundamentally, why should someone else saying I'm "half-baked" or mediocre etc matter to me? Why should my merely losing a contest...which is after all usually no more than someone else's opinion of my work (my writing or art) undermine me or make me jealous? If I care about myself, and know my value, then I can realistically appraise my level of expertise and how far I have come as writer and artist, and know "how good I am" in whatever I do. Then I do not need the validation of a prize, and when I get one or when I do not, it need never change my feelings or opinions of myself or my work.
You have to love yourself, because you are going to make mistakes and you will need to be able to forgive yourself. You have to know that you are lovable, fundamentally, because you can love yourself. No matter how bad a mistake you make, no matter how thoughtless you accidentally are, no matter how mean your thoughts and words might sometimes be, that you know, beyond a doubt, the YOU are lovable despite all of that. If only we knew that, all of us, maybe we'd feel less insecure in the world. I know I still obsess about being evil and taking up too much space in the world. And I feel incredibly hate-able, despite all that I have said above. I feel like any Force or Energy or Essence or Spirit or God that might have set us spinning is disgusted by me and will soon teach me a terrible lesson, revenge-time, you know. I have all these unlovable-me feelings that run underneath all my fine words and undermine all I do. But can you imagine if I did not?
Did any of you see the movie: WHAT THE BLEEP DO WE KNOW? If not, you absolutely Must. When you see those photos of water, plain water, vs water that has been prayed over, water that has been told, I love you, and water that has been told, You make me sick, I hate you! It will break your heart but in a good way. The man -- his comment to Marlee Matlin then means everything. The movie is part documentary, part movie-movie, part weirdness animation, but I loved it and so far so has everyone I know who has seen it. It might give you some ideas to think about when jealousy and bad feelings and feelings of unlovabity hit you, too.
Thursday, March 12, 2009
Schizophrenia: An Article: Twin Realities
I believe this link should bring you to an article once published in the Hartford Courant, and then linked to by schizophrenia.com (a now defunct site, with some still working links). It was written in 2003 about me and my sister and family, and may be instructive...Things are much better now, needless to say. Also, partly as a result of this article, my father and I have reconciled.
http://www.schizophrenia.com/stories/twins.htm
PLEASE NOTE: if it takes you to a page of poetry that the poems were first drafts and none of them are in the same condition as they are now when finished...
http://www.schizophrenia.com/stories/twins.htm
PLEASE NOTE: if it takes you to a page of poetry that the poems were first drafts and none of them are in the same condition as they are now when finished...
Wednesday, March 11, 2009
Schizophrenia and Sleep: A Miracle drug?
There's a story here that I haven't told completely because I haven't wanted to muddy the waters or get people's hopes up for a drug that might help one person in a million. |But my esteemed psychiatrist and sleep specialist, Dr O, thinks I shouldn't be so reticent, that I should explain what happened in full, because research is still being done and who's to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.
Wednesday, March 4, 2009
Wildflowers On the Road to Damascus: A little Essay
Thirty years ago, I took the natural history course purely for exercise. I figured, what better way to stay in shape than to get credit for it? At the time, I couldn't tell a maple from an oak, let alone one old weed from another, and it wouldn't be easy. But just to keep off the flab would be a benefit in its own right. Since the prospectus promised daily field trips, no mention of love or awe or wonder, the last thing I expected was a miracle.
Showing up for the first day's trip, I wore old tennis shoes, of the thin-canvas Keds variety. I had no idea L.L. Bean's half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I'd made a huge mistake and it was too late to change my mind -- I'd have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting exercise than I ever would have with my thighs turning to mush safe in the college library.
The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we'd gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. "Heal-all. Prunella vulgaris," she announced sternly and without passion. "Vulgaris means 'common.' Learn both names, genus and species. Be forewarned, 'Heal-all' by itself will not be an adequate answer on your quizzes."
She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names weíd been given. I was still at the back, waiting my turn without the least enthusiasm let alone the anticipation of what, in those days, we called a mind-blowing experience.
"Come on, now, don't be shy. Step up and look for yourself," Miss G scolded me, pushing at my elbow to propel me closer.
Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when sheíd said: Weeds are only wildflowers growing where they aren't wanted. Prunella, I know now, was no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem ñ on impulse, I'd reached out to touch it and discovered an amazing fact: the stem wasnít round! Heal-all was the single most beautiful thing I'd ever seen. The world went still--there was only the flower and the realization I'd fallen in love.
Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I'd been struck by unexpected lightning and converted. I put away my notebook, knowing I wouldn't need to write down a word, knowing I'd never forget "common Prunella" as long as I lived.
There were many other miracles in my life after that, but none came close to the thunderbolt that knocked me flat that afternoon when I saw, truly saw, that homely little mint for the first time. "Sedges have edges but rushes are round and grasses have nodes where willows abound." Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less subconsciously, and gold would magically appear.
I went walking in the woods every chance I got and carried Peterson's guides with me even into town, checking out the most humble and inconspicuous snippet of green that poked through the sidewalk cracks. The first time I came out with a certain plant's genus and species before Miss G told the class what we were seeing, she looked at me oddly. I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too caught up in looking at each tree to keep up the pace.
By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds--it was the trees and wildflowers that stole my heart entire.
At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: "Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class." End quote. "Failed to share her established expertise"? What was she talking about? Did she think I'd already known everything she taught us? How could she not understand what she'd done for me, introducing me to little Prunella, how I'd learned everything I knew after that moment, not before?
It was the worst evaluation I'd ever been given, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she'd been called away on a family emergency and would not be returning until the next semester. But I wasn't returning for the second semester. I was transferring back to my original school.
I caught my ride home, spending four hours crammed into the back of an old Volkswagen with three other students, wordless with indignation that reverberated in my mind. How could she think such a thing? I couldn't stop writing and rewriting a letter of protest in my head as the highway flowed endlessly beneath us.
I did write the letter, finally, explaining all she'd awoken in me, emphasizing my new-found joy and amazement. At the end of March I got a reply, but no apology or hint that she understood her misunderstanding. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn't quite remember who I was, that I was just another faceless student writing to her about a natural history course she'd taught perhaps forty times in her long career as a teacher.
Whether she knew who I was or even recognized what she'd done for me mattered little in the end. What did matter was that when I met homely little Prunella I discovered the whole world in a common weed and it changed my life.
Showing up for the first day's trip, I wore old tennis shoes, of the thin-canvas Keds variety. I had no idea L.L. Bean's half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I'd made a huge mistake and it was too late to change my mind -- I'd have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting exercise than I ever would have with my thighs turning to mush safe in the college library.
The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we'd gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. "Heal-all. Prunella vulgaris," she announced sternly and without passion. "Vulgaris means 'common.' Learn both names, genus and species. Be forewarned, 'Heal-all' by itself will not be an adequate answer on your quizzes."
She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names weíd been given. I was still at the back, waiting my turn without the least enthusiasm let alone the anticipation of what, in those days, we called a mind-blowing experience.
"Come on, now, don't be shy. Step up and look for yourself," Miss G scolded me, pushing at my elbow to propel me closer.
Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when sheíd said: Weeds are only wildflowers growing where they aren't wanted. Prunella, I know now, was no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem ñ on impulse, I'd reached out to touch it and discovered an amazing fact: the stem wasnít round! Heal-all was the single most beautiful thing I'd ever seen. The world went still--there was only the flower and the realization I'd fallen in love.
Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I'd been struck by unexpected lightning and converted. I put away my notebook, knowing I wouldn't need to write down a word, knowing I'd never forget "common Prunella" as long as I lived.
There were many other miracles in my life after that, but none came close to the thunderbolt that knocked me flat that afternoon when I saw, truly saw, that homely little mint for the first time. "Sedges have edges but rushes are round and grasses have nodes where willows abound." Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less subconsciously, and gold would magically appear.
I went walking in the woods every chance I got and carried Peterson's guides with me even into town, checking out the most humble and inconspicuous snippet of green that poked through the sidewalk cracks. The first time I came out with a certain plant's genus and species before Miss G told the class what we were seeing, she looked at me oddly. I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too caught up in looking at each tree to keep up the pace.
By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds--it was the trees and wildflowers that stole my heart entire.
At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: "Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class." End quote. "Failed to share her established expertise"? What was she talking about? Did she think I'd already known everything she taught us? How could she not understand what she'd done for me, introducing me to little Prunella, how I'd learned everything I knew after that moment, not before?
It was the worst evaluation I'd ever been given, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she'd been called away on a family emergency and would not be returning until the next semester. But I wasn't returning for the second semester. I was transferring back to my original school.
I caught my ride home, spending four hours crammed into the back of an old Volkswagen with three other students, wordless with indignation that reverberated in my mind. How could she think such a thing? I couldn't stop writing and rewriting a letter of protest in my head as the highway flowed endlessly beneath us.
I did write the letter, finally, explaining all she'd awoken in me, emphasizing my new-found joy and amazement. At the end of March I got a reply, but no apology or hint that she understood her misunderstanding. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn't quite remember who I was, that I was just another faceless student writing to her about a natural history course she'd taught perhaps forty times in her long career as a teacher.
Whether she knew who I was or even recognized what she'd done for me mattered little in the end. What did matter was that when I met homely little Prunella I discovered the whole world in a common weed and it changed my life.
Thursday, January 29, 2009
Schizophrenia Blog: Coming Out...Plus
Hello, to anyone who finds my blog via this post, having come from Kate's Yin and Yang website. Today is the first day the reincarnation of this blog came into the public sphere, after the original was lost from schizophrenia.com (that whole site now erased and/or abandoned). The process of reconstructing it here as we speak will take a long time as the whole blog covered 5 years. Even if some 500 pages cannot, alas, be retrieved, 1000 pages will be converted to posts here if I successfully accomplish my goal. I hope as well to add to it in the process, though in the end, I'd like to merge it, or at a minimum, link it to my wagblog.wordpress.com blog, since the two, though somewhat dissimilar, are nonetheless both authored by me and ought at least to be related in some fashion so readers of one can if interested get to the other.
------------------------------------------------------------------------------------------
"My head is filling with people screaming and gnashing their teeth...I fear I may need to barricade the door." That's how I ended my last wordpress blog entry, the one I wrote tonight, after the visiting nurse, finally reassured I'd be safe, left. Oh, I am safe, safe from myself at any rate, which is what I knew mattered to her, visiting behavioral health nurses always being concerned most about suicide and/or acts of self-injury towards that end. And since I have followed such commands to set my leg on fire or put rolls of cigarettes out on my face, I suppose I can appreciate her concern. But tonight, it is not myself whom I fear, but the social chaos of a society gone mad with fear. They are all running away from the rising water, the rising sea level, the reversed gulf stream that is freezing the coast line forcing everyone inland. That is what they tell me, all the people, crying and moaning...But then they stop and there is quiet and I am confused. Where did they go? How could so many miserable, terrified people outside my door suddenly fall quiet en masse? Do I dare look outside? Do I dare go outside my door?
I just put the barricade up and my heart rate fell shortly thereafter, as the noise level went down as well. Now I feel safe. Now I feel safe.
I will return to the reconstruction of the Wagblog of schizophrenia.com website except that I want to add one thing. Please note the following, which I found on the website "Is Barack Obama the Messiah" website: 'Lawrence Carter, dean of the Martin Luther King Jr. International Chapel] said many people look for a sign from God when times are turbulent. And, he said, there are many elements to Obama's win in which Christians can find spiritual significance.
"It is powerful and significant on a spiritual level that there is the emergence of Barack Obama 40 years after the passing of Dr. King," said Carter. "No one saw him coming, and Christians believe God comes at us from strange angles and places we don't expect, like Jesus being born in a manger."
Some see God's will in Obama win, by Dahleen Glanton. Chicago Tribune November 29, 2008.'
There were other such evaluations but I would like to make an observation: one is that Barack comes from B-R-K, in arabic meaning "blessed or blessing", two, that Hussein, his middle name, is an alternate spelling of Husayn, which is a diminutive of Hasan, the grandson of the prophet Muhammed, the founder of Islam. (Note: Obama's father was born a Muslim but soon became atheist, while Obama himself belongs to the United Church of Christ.) Nevertheless I would note that Hasan/Hussein refers back to a god-like or prophetic personage, which is significant, though not the specific religion. Three, and this strikes me as most important of all, while "Obama" itself may have no meaning, what no one has noted before, spelled backwards, amabo, it means in Latin "I will love...". And who will love, unconditionally everyone? Jesus, come again, in glory and splendor to usher in the Kingdom of God, but also the End of this World.
I will say no more, only present the evidence such as it is and let you look upon it. It is not complete, not here, not yet. But as the weeks pass I will be adding to it if it presents itself further to my eyes. As I believe it will. For I suspect that this good man at the head of our government is not to lead us merely out of a temporary "economic downturn" but has, as it has been suggested from many many corners, "come to lead us" in the path of righteousness...and towards an unimaginable future. Alas, it is a future I myself do not wish to see, being too lovingly attached to this green world, as little green as it still is. And I do not want to have it end, not even for the second coming of Christ. So I grieve it's loss the more, and weep and weep...
_____________________________________________
------------------------------------------------------------------------------------------
"My head is filling with people screaming and gnashing their teeth...I fear I may need to barricade the door." That's how I ended my last wordpress blog entry, the one I wrote tonight, after the visiting nurse, finally reassured I'd be safe, left. Oh, I am safe, safe from myself at any rate, which is what I knew mattered to her, visiting behavioral health nurses always being concerned most about suicide and/or acts of self-injury towards that end. And since I have followed such commands to set my leg on fire or put rolls of cigarettes out on my face, I suppose I can appreciate her concern. But tonight, it is not myself whom I fear, but the social chaos of a society gone mad with fear. They are all running away from the rising water, the rising sea level, the reversed gulf stream that is freezing the coast line forcing everyone inland. That is what they tell me, all the people, crying and moaning...But then they stop and there is quiet and I am confused. Where did they go? How could so many miserable, terrified people outside my door suddenly fall quiet en masse? Do I dare look outside? Do I dare go outside my door?
I just put the barricade up and my heart rate fell shortly thereafter, as the noise level went down as well. Now I feel safe. Now I feel safe.
I will return to the reconstruction of the Wagblog of schizophrenia.com website except that I want to add one thing. Please note the following, which I found on the website "Is Barack Obama the Messiah" website: 'Lawrence Carter, dean of the Martin Luther King Jr. International Chapel] said many people look for a sign from God when times are turbulent. And, he said, there are many elements to Obama's win in which Christians can find spiritual significance.
"It is powerful and significant on a spiritual level that there is the emergence of Barack Obama 40 years after the passing of Dr. King," said Carter. "No one saw him coming, and Christians believe God comes at us from strange angles and places we don't expect, like Jesus being born in a manger."
Some see God's will in Obama win, by Dahleen Glanton. Chicago Tribune November 29, 2008.'
There were other such evaluations but I would like to make an observation: one is that Barack comes from B-R-K, in arabic meaning "blessed or blessing", two, that Hussein, his middle name, is an alternate spelling of Husayn, which is a diminutive of Hasan, the grandson of the prophet Muhammed, the founder of Islam. (Note: Obama's father was born a Muslim but soon became atheist, while Obama himself belongs to the United Church of Christ.) Nevertheless I would note that Hasan/Hussein refers back to a god-like or prophetic personage, which is significant, though not the specific religion. Three, and this strikes me as most important of all, while "Obama" itself may have no meaning, what no one has noted before, spelled backwards, amabo, it means in Latin "I will love...". And who will love, unconditionally everyone? Jesus, come again, in glory and splendor to usher in the Kingdom of God, but also the End of this World.
I will say no more, only present the evidence such as it is and let you look upon it. It is not complete, not here, not yet. But as the weeks pass I will be adding to it if it presents itself further to my eyes. As I believe it will. For I suspect that this good man at the head of our government is not to lead us merely out of a temporary "economic downturn" but has, as it has been suggested from many many corners, "come to lead us" in the path of righteousness...and towards an unimaginable future. Alas, it is a future I myself do not wish to see, being too lovingly attached to this green world, as little green as it still is. And I do not want to have it end, not even for the second coming of Christ. So I grieve it's loss the more, and weep and weep...
_____________________________________________
Friday, January 16, 2009
Major Delusion: Grey Crinkled Paper
This was originally written on 7/14/2004, just before I was hospitalized I believe.
MANIFESTO or Grey Crinkled Paper #2
First, personal business: the voices are back, music especially, but also the old password voice running along, like a TV show's "audio crawler." This is very distracting, even the music, yet at times, as commentary, it seems much more truthful than what is said by those whose voices are "real" or at least non-hallucinatory. I know I saw some show with my friend Joe that illustrated what these voices are like, within other contexts and in other times, but we’ve both forgotten which show it was (perhaps Star Trek Voyager?). As I wrote in my entry on "Voices," the movie, LULU ON THE BRIDGE, gives a brief but helpful example of the more muted, confused babbling form they sometimes take, as when, for example, Harvey Keitel is walking along that wall at night...
In any event, the password voice is my one-word short-hand for the way the voices sometimes sound to me: 1) monotone 2) stage-whispered 3) secretive yet as if imparting a truth others should not hear.
That said, let me explain what they talk about:
Grey Crinkled Paper, first of all, which must be spelled grEy not grAy, though the reason for this particular spelling is unknown to me. How it came to be part of my life was, as I belive I wrote in the first Grey Crinkled Paper entry, at age 16 or 17 when my body inflated like a Macy's Thanksgiving Day parade balloon and my hands turned blue, which was the most important thing about the experience before the vision, revelation -- what have you, something that cannot be truly verbalized -- came to me in the words: Grey Crinkled Paper. It was what I understood to be a kind of holy trinity, very much like Father, Son, Holy Ghost, or Newtonís 3 laws of thermodynamics, or Einsteinís three: 1) the special theory of relativity, 2) the general theory and 3) the (never discovered) unified field theory.
Now, there are complications to this, because once I can get the problem of GCP solved at least in this world, I will be freed from the Supermetal Canister into which I was placed as punishment for some higher dimensional crime. Meanwhile, onto the walls of this canister are projected in All-Sensurround the reality of this 3-D earth-world, while electrodes, implanted in my skull, impart knowledge of cosmic history as well as of a personal life, consisting of "memories" as well as their significance.
(The other way to free myself, apart from solving the problem of Grey Crinkled Paper, would be to surgically remove these electrodes, which would be painful, but which would prove my worthiness to be welcomed back to those higher dimensions...)
To continue from previous paragraph:
which means that people here are actually no more than the equivalent of movie projections, only apparently real. When I am liberated, all of them will, along with the world and the rest of the canister’s projections, end, pfft!--with no more suffering than Humphrey Bogart "feels" when Casablanca finishes for the umpteenth time.
The Canister is made of Supermetal which has always been explained to me as Titanium/Uranium. Whether this is a feasible earthly metal alloy or simply the English equivalent for something there we have no concept for I don’t know.
Involved with this are the Five People. They 1) are not in themselves stable as persons, that is in their appearances; they will take on a body when convenient and leave it when it is no longer useful, without the real person ever being aware of it, 2) these bodies are disguises, ever-fluid and changeable at will. For example, there was one security guard when I lived in supervised housing at the old nurses' dorm at the hospital that I knew was one of the Five People, and he knew I knew, which led him to torment me openly: bugging my room, video-monitoring me, giving me non-verbal messages whenever I passed him. I recognized him, and his face stayed the same that entire year, but as soon as I moved out, he left that body and now I no longer know where he is or in which body he is hiding.
I have had for some time now a vague suspicion that the part-time social worker in this building may be one of the Five People, if not the very same one but the same one or anther it scarcely matters... 3) what I know of these Five People is little except that they used to be controlled by my father and were utilized to monitor me, and therefore theoretically they could be used to eliminate me at any time. However, my being the messenger of Grey Crinkled Paper might attentuate this power, making it impossible for someone-- whoever is behind them, whoever is controlling and sending them --to actually kill me.
Who or what these Five People are, why they are, where they come from, these non-human beings (emphatically not aliens) is not very clear to me right now beyond this. One thing I understand is that like most things in this context, they too must have some connection to the higher dimensions and Grey Crinkled Paper.
Grey Crinkled Paper BTW is a concept and is neither grey-colored nor paper-y nor crinkled. No single word of it can be taken separately to signify anything without the other two.
However, Grey Crinkled Paper doesn’t mean anything either, not even to me. It is only a message of supreme importance. It just is the vehicle, the memo given to the messenger who happens to be me, and until it is understood by all, can be understood by none and cannot be utilized as it should be to achieve world peace. The problem is that in order for anyone to get the true meaning, it must be translated 22 times by 22 native speakers of 22 different languages or dialects, two of which *must* be Arabic and Farsi (I don’t actually know if this last is a written or spoken language, moreover, I didn’t know what the word meant at all when I was first given the information and assignment at age 16).
This part is critical: The translation of Grey Crinkled Paper must be sequential in time and space and must be done without reference to or help from the original transfer-er of the message (ie me). You can think of the translation process like this: it's as if someone were to say the quay of Normandy and another person heard it as key of Norman Dee and then translated this into his or her native language. Such a misunderstanding is inevitable and it is not a error but is the entire point. Like the telephone game that kids play in which a phrase, whispered from child to child, comes out transformed at the end, so too will GCP be transformed. While the child's game’s message may be nonsense, in the 22-link chain of the Grey Crinkled Paper translation, the end result will make a sense that everyone will instantly understand and appreciate. In short it will reveal the true meaning of the phrase rather than obscuring it.
Can you understand this? The one necessary part of this process is the final translator in the chain, who must be a non-native speaker of English, who therefore would have no inherent drive to make "sense" of what he or she hears. She would only innocently convert what she is given into the English words she knows, which would turn out to be the final message, the Truth.
This is all so far focused in the Middle East, but not all the languages or dialects (so far as I can determine) need to come from that area. I know only that Farsi and Arabic *must* be among them.
Why the movie THE MATRIX is so important is related to all the above: this film takes Reality (ie GCP), which it has sucked out of my head, and converts it to a Concept, a falsification by definition, which is the first insult. But then it proceeds to distort this into fiction, to make it comical and falsely profound. Finally, it garners huge profits and a wide fan base for its makers, which is a triple or quadruple whammy against me, not to mention the sort of sacrilegious mockery no one would dare perpetrate against Catholicism or Islam or Judaism. The movie is indeed amazing, I agree, especially insofar as it gets certain things right, like the character of Morpheus, played, as you may recall, by Lawrence Fishbourne. But the inaccuracies soon multiply and it begins to infuriate me even as it mesmerizes me to see anything like it made public. What amazes me still is that the movie was made at all, and apparently without fear of the disavowal and disrespect I know I’d have been treated to had I propounded the very same Truths.
Thatís all I have to write about these subjects for now. But these are only partial thoughts and not the whole matter by any means.
MANIFESTO or Grey Crinkled Paper #2
First, personal business: the voices are back, music especially, but also the old password voice running along, like a TV show's "audio crawler." This is very distracting, even the music, yet at times, as commentary, it seems much more truthful than what is said by those whose voices are "real" or at least non-hallucinatory. I know I saw some show with my friend Joe that illustrated what these voices are like, within other contexts and in other times, but we’ve both forgotten which show it was (perhaps Star Trek Voyager?). As I wrote in my entry on "Voices," the movie, LULU ON THE BRIDGE, gives a brief but helpful example of the more muted, confused babbling form they sometimes take, as when, for example, Harvey Keitel is walking along that wall at night...
In any event, the password voice is my one-word short-hand for the way the voices sometimes sound to me: 1) monotone 2) stage-whispered 3) secretive yet as if imparting a truth others should not hear.
That said, let me explain what they talk about:
Grey Crinkled Paper, first of all, which must be spelled grEy not grAy, though the reason for this particular spelling is unknown to me. How it came to be part of my life was, as I belive I wrote in the first Grey Crinkled Paper entry, at age 16 or 17 when my body inflated like a Macy's Thanksgiving Day parade balloon and my hands turned blue, which was the most important thing about the experience before the vision, revelation -- what have you, something that cannot be truly verbalized -- came to me in the words: Grey Crinkled Paper. It was what I understood to be a kind of holy trinity, very much like Father, Son, Holy Ghost, or Newtonís 3 laws of thermodynamics, or Einsteinís three: 1) the special theory of relativity, 2) the general theory and 3) the (never discovered) unified field theory.
Now, there are complications to this, because once I can get the problem of GCP solved at least in this world, I will be freed from the Supermetal Canister into which I was placed as punishment for some higher dimensional crime. Meanwhile, onto the walls of this canister are projected in All-Sensurround the reality of this 3-D earth-world, while electrodes, implanted in my skull, impart knowledge of cosmic history as well as of a personal life, consisting of "memories" as well as their significance.
(The other way to free myself, apart from solving the problem of Grey Crinkled Paper, would be to surgically remove these electrodes, which would be painful, but which would prove my worthiness to be welcomed back to those higher dimensions...)
To continue from previous paragraph:
which means that people here are actually no more than the equivalent of movie projections, only apparently real. When I am liberated, all of them will, along with the world and the rest of the canister’s projections, end, pfft!--with no more suffering than Humphrey Bogart "feels" when Casablanca finishes for the umpteenth time.
The Canister is made of Supermetal which has always been explained to me as Titanium/Uranium. Whether this is a feasible earthly metal alloy or simply the English equivalent for something there we have no concept for I don’t know.
Involved with this are the Five People. They 1) are not in themselves stable as persons, that is in their appearances; they will take on a body when convenient and leave it when it is no longer useful, without the real person ever being aware of it, 2) these bodies are disguises, ever-fluid and changeable at will. For example, there was one security guard when I lived in supervised housing at the old nurses' dorm at the hospital that I knew was one of the Five People, and he knew I knew, which led him to torment me openly: bugging my room, video-monitoring me, giving me non-verbal messages whenever I passed him. I recognized him, and his face stayed the same that entire year, but as soon as I moved out, he left that body and now I no longer know where he is or in which body he is hiding.
I have had for some time now a vague suspicion that the part-time social worker in this building may be one of the Five People, if not the very same one but the same one or anther it scarcely matters... 3) what I know of these Five People is little except that they used to be controlled by my father and were utilized to monitor me, and therefore theoretically they could be used to eliminate me at any time. However, my being the messenger of Grey Crinkled Paper might attentuate this power, making it impossible for someone-- whoever is behind them, whoever is controlling and sending them --to actually kill me.
Who or what these Five People are, why they are, where they come from, these non-human beings (emphatically not aliens) is not very clear to me right now beyond this. One thing I understand is that like most things in this context, they too must have some connection to the higher dimensions and Grey Crinkled Paper.
Grey Crinkled Paper BTW is a concept and is neither grey-colored nor paper-y nor crinkled. No single word of it can be taken separately to signify anything without the other two.
However, Grey Crinkled Paper doesn’t mean anything either, not even to me. It is only a message of supreme importance. It just is the vehicle, the memo given to the messenger who happens to be me, and until it is understood by all, can be understood by none and cannot be utilized as it should be to achieve world peace. The problem is that in order for anyone to get the true meaning, it must be translated 22 times by 22 native speakers of 22 different languages or dialects, two of which *must* be Arabic and Farsi (I don’t actually know if this last is a written or spoken language, moreover, I didn’t know what the word meant at all when I was first given the information and assignment at age 16).
This part is critical: The translation of Grey Crinkled Paper must be sequential in time and space and must be done without reference to or help from the original transfer-er of the message (ie me). You can think of the translation process like this: it's as if someone were to say the quay of Normandy and another person heard it as key of Norman Dee and then translated this into his or her native language. Such a misunderstanding is inevitable and it is not a error but is the entire point. Like the telephone game that kids play in which a phrase, whispered from child to child, comes out transformed at the end, so too will GCP be transformed. While the child's game’s message may be nonsense, in the 22-link chain of the Grey Crinkled Paper translation, the end result will make a sense that everyone will instantly understand and appreciate. In short it will reveal the true meaning of the phrase rather than obscuring it.
Can you understand this? The one necessary part of this process is the final translator in the chain, who must be a non-native speaker of English, who therefore would have no inherent drive to make "sense" of what he or she hears. She would only innocently convert what she is given into the English words she knows, which would turn out to be the final message, the Truth.
This is all so far focused in the Middle East, but not all the languages or dialects (so far as I can determine) need to come from that area. I know only that Farsi and Arabic *must* be among them.
Why the movie THE MATRIX is so important is related to all the above: this film takes Reality (ie GCP), which it has sucked out of my head, and converts it to a Concept, a falsification by definition, which is the first insult. But then it proceeds to distort this into fiction, to make it comical and falsely profound. Finally, it garners huge profits and a wide fan base for its makers, which is a triple or quadruple whammy against me, not to mention the sort of sacrilegious mockery no one would dare perpetrate against Catholicism or Islam or Judaism. The movie is indeed amazing, I agree, especially insofar as it gets certain things right, like the character of Morpheus, played, as you may recall, by Lawrence Fishbourne. But the inaccuracies soon multiply and it begins to infuriate me even as it mesmerizes me to see anything like it made public. What amazes me still is that the movie was made at all, and apparently without fear of the disavowal and disrespect I know I’d have been treated to had I propounded the very same Truths.
Thatís all I have to write about these subjects for now. But these are only partial thoughts and not the whole matter by any means.
Wednesday, January 7, 2009
Writing, Memory and the Facts of the Matter
NOTE: This is also post in another blog, Wagblog, but it has an addendum at the end that the other blog does not. I try to keep the two separate and different but cannot always do so, and I found the discussion of sufficient interest as to want to have it in both places. If you happen to have read this in Wagblog, just skip to the end and read the last few paragraphs, which are set apart by a line.
-----------------------------------------------------------------
I am trying to start a new book, another memoir. This is an exciting endeavor but I’ve gotten stuck on the problem, a perennial one I imagine, of how much does one really remember, and how much does the mind “make up," that is, remember improperly? I know that some writers of autobiography -- to my mind a more stringent form, requiring research and some historical context --and memoir make the claim that every word they have written is factually accurate, to the extent that they have checked each one against the memories and records of others. Then there are the infamous ones who have played so fast and loose with the truth as to have lost all semblance of it. These have produced literary scandals (as well as books that probably earned their authors much more income than if they had actually stuck to the facts) and more or less short-lived discourses by the punditry on the nature of truth and memory: what can we really know? Since I am something of a sucker I tend to take both of these at their words, when in fact I daresay that neither of them ought to be. True enough, the one has done more work than the other, and has made an honest effort to search for the "real facts" in his or her history, but my question is this: Can it be done, one, and two, why should the collective memories of say, ten people chosen by the author (biassed) be more "objectively real" than the simple truth of what the author herself remembers? Yes, you might build up a larger group of pieces-of-the-elephant if you have ten blind people who feel only one part. But unless you have someone who knows how the pieces fit together, you still only have elephant pieces...And so ten pieces are no better than the one in the end.
What I am saying is this: the author, the person who lived the life has to be the one to make sense of it. She might have a thousand "elephant pieces" -- memories given her by ten people, yes, or only her own memories but in the end she must construct what the elephant – her life--looked like out of them. In some sense, there are facts and there are facts, but the work, and the life, and the living is all in the interpretation; always was and always will be.
That said, I am having trouble getting started, because I don't know whether I want to use more "objective" sources or evidence this time, or not. I am perfectly comfortable using what is close at hand: my journals, my photos, the people I can easily consult. And I do feel very uncomfortable with mining deeper records: I do not particularly want to see what is written on my hospital charts during months-long stays when I was ranting and screaming for days, or engaging in outrageous behaviors like taking a dump on the floor of the seclusion room, or disrobing and...I can scarcely bear to think I did such things, frankly, and do not want to read what was written about me at the time, knowing nothing can be corrected or updated to show them the "new me". A sad fact about hospital records and workers: they only see you when you are at your worst; they rarely get to know if you get better. Much less get to know you when you are well. And if you ever wanted to sit down and tell them what was actually going through your brain at the time they believed XYZ, but in fact QRS was happening, well, forget it.
So, I am loathe to overturn those stones, growing mossy as they nearly are now, some four years later. It pains me even to bring my mind across the memories of them. I have no wish to flagellate myself. My own journals say little, but it's about all that I want to know. At the same time, my own brow-beating conscience tells me, NO, you must do what you do not want to do. The very fact that you do not want to do it means that you should. No pain, no gain—
Oh, I just go on and on. I would make this next book a torture to me, nothing of pleasure at all, just to serve my scruples. Be gone! If the writing is only to torture me, why do it? I'd be better off with my artwork and sculpture. But writing nurtures me, so long as I do not let my illness turn it into a punishment. Is there any need for me to use the historical records in telling the tale of my life? Did my first book lose anything in my not doing so? I would change a lot in DIVIDED MINDS, if I could go back and do so -- add scenes here, take out one or two, most certainly make better transitions -- but except for appending a much clearer discussion of this very issue, and also a better disclaimer, I wouldn't change the way we wrote it.
So I might have talked myself to a place from which I can start, allowing myself the freedom not to have to delve into the official records or consult professionals involved in my care unless I am currently in treatment with them.
Your past after all resides as much in what you remember as it does in anything documented. You are mostly what you remember, and what you remember is sculpted by time and changes over time. If you think your memories remain the same, read back in a diary you haven’t read before, and recover the accounting of a incident you thought you’d recalled with accuracy...You’ll see how inaccurate your “memory” was and how formative this memory had been nevertheless. Then remember that the accounting is itself a memory, tainted by emotion and interpretation and consider those “ten people with their elephant pieces” who tried to give you objective memories of your history. Were they truly objective? Were their memories, even collectively, any more factual and objective than your memories?
In the end, memory is fiction, as someone once wrote in The New Yorker magazine, memory is, well, made up, not real, imagined. I agree, but it is all we have. Literally. Without memory we would be without anything at all, no culture, no civilization, no nuthin’. So let’s not pretend that the fact that memory is fiction isn’t critical. We need memory, and memory is, well, fundamentally untrustworthy, which is why we need thinking, and thinkers and writers to interpret history and memory... Memory is the most important thing we have, the most important attribute we can impart to anything: in almost every sense of the word, when we remember something we keep it alive. Maybe not literally, but then again, it is memory that keeps a conversation going on longer than five minutes. If you forgot what you were talking about ten minutes ago, or to whom you were speaking, nothing much would get said...
--------------Here is what someone said to me about the above:
> Memory is a tricky subject, a tricky entity. For you, I guess it all depends
> on what incidents you want to concentrate on in your memoir. I don't think
> you need to be slavishly dedicated to finding all the facts, just the ones
> that relate to your particular tale. I think using your journals and blogs
> and listening to those people who are close to you is the right start.
>
> But what is it you want to emphasize in your memoir? Poking into some of
> those unpleasant memories might furnish the right contrast to your ultimate
> success in becoming a published writer and artist. But only up to a point,
> after all you only need a few examples. The bulk need not be so unpleasant.
>
> Memory. I've lost a lot of my memories, but I still have the feeling that
> some of them are accessible if I could just be patient enough. I, too, have
> thought that it is not possible to recreate a life on paper unless you take a
> creative license. The main thing is that you are striving to be honest in
> your work.
-----------------------------------------------------------------------------------
And here is my response to what she wrote to me:
Interesting thoughts. The problems with "finding all the facts" is the question of where and how and who is going to have them? I mean, I could go, for example, to the records of the psychiatric institute where I was once hospitalized after a catatonic episode triggered by an adverse reaction to risperidone. In the ED they dismissed it as "playing possum" once they determined it was catatonia and not a "pontine stroke" and sent me to the psych hospital. There they took me off all meds, and watched me go into a kind of withdrawal, since I'd been abruptly hauled off of two anticonvulsants and a beta blocker as well as 2 antipsychotics and an antidepressant. Within 3 days I was ready to go into seizures and could have had a cardiac arrhythmia or worse, and was literally trembling and sweating with fear and panic, all because they refused to give me my usual medications. On top of this, they claimed my bloodwork said I was positive for "cannabis and benzodiazapines." Now obviously they had mixed me up with someone else and I tried to tell them this, but they didn't believe me and told me there was no way I could have the "mistake" expunged from my record.
The next day, the doctor told me I had assaulted him, to my face accused me, or rather bald-faced lied by saying so, since it simply never happened. I had been there and was conscious. He said that at lunch I had assaulted him with my lunch tray...which was complete and utter hooey...I had not done any such thing, had not even threatened him, not even verbally, not even spoken a threat...He was simply planting seeds to keep me there...
Now then, if I went back to this unit to find "facts" in the record, what would I find there? Facts? Truth? Hardly...I would find, what? An account of some sort, yes, and maybe some of it might be what one nurse or some other believed was going on. It turned out some believed that I had come in high on grass and benzos. But was it true, was it a fact? No. I would not discover anything in the chart, then, that would teach me something I should know about me I didn't know, that is, no facts, only misstatements and even lies...Which might in fact be interesting but NOT factual. And I might learn some opinions about my behavior, some opinions, which is what nursing notes are, about how it appeared I was feeling or what I said. But not much more besides my BP and temps and maybe a few other "objective" stats, though those were few and far between. Some of those were mistaken as well, since one male nurse decided to lie about my weight and what I ate ("for my sake") so I wouldn't be made to gain any weight. He liked me thin, he said...CRAZY, right? But this was all true, and factual though not what was written down in the chart.
Too bad I didn't take more careful notes during this one hospitalization (I usually am never without a pen and notebook) or if I did, I have not found them. But I do recall this clearly, because it so incensed me it was "flashbulbed" into my memory...Because I was so incredibly upset and distressed by everything that happened during my relatively brief stay and so distraught half the time, I think most of it was simply etched into my brain, unlike many bad times, which have been erased like blood washed off painted walls.
Anyhow, I didn’t mean to go on and on about this. Fact is, I have plenty of unpleasant memories to offset the good ones, believe me. And I am honest enough and a good enough writer to want to write about them! (Also, I know how to maintain tension and you don't do it by writing only about positive or happy events, as my first book ably demonstrated...)
As for creative license, I dunno...I only wrote what I remembered, as I remembered it, in my first book. In other words, I did not invent anything, except inso far as I was forced by the publisher to amalgamate elements of one doctor into another. But the incidents were as I recalled them, even if the physical attributes of the doctors might have changed. But frankly the resident doctors were a dime a dozen, there were so many. And the faces were interchangeable anyway. I just remember that the doctor stood there, and that he did such and such. Only a few docs that I worked with for a longer span of time really became individual. But the residents that I only saw for a month or two inside the hospital, those I do not recall. Nevertheless, I do not use “creative license” in the sense of inventing memories or fictionalizing. Memory may be fiction, but that doesn't mean that writing your memories, writing memoir, means that you simply make them up! Perhaps you misunderstood that discussion -- memory is fiction merely implies that one's memories are malleable, fluid, and that they do not correspond to anyone else's. That the truth is determined by one's memories of the so-called facts, which themselves are nowhere to be found, not even in the equally nowhere to be found "historical record" (which is about as reliable as my hospital chart!)
Dialogue is by necessity imprecise. I don't believe anyone reconstructs conversations accurately. But I know what I think people said or what I remember they said. If I also know how faulty that recall is, I also don’t consciously invent memories of it or even parts of memories. I am simply aware how differently others might recall the very same situation. In short, truth, that is, the facts are not absolute: no matter how certain you are that something happened as you saw it, you can be sure that there is someone who saw it happen precisely the opposite way and holds that view with equal certainty.
Enough...I am certain you did not expect or need this much of a disquisition on the subject. I thank you, however, for triggering some additional thinking on the matter.
Tuesday, January 6, 2009
Twice-Told Tales: Russell Weston and Michael Lauder
This is actually double cheating as it was first written as a blog entry in 7/2004.
_____________________________________________
I realize this is "cheating" but a friend found this 1998 article I wrote for the Hartford Courant (which published it under another title) when he was cleaning up his apartment, and he brought it up for me to reread. I thought that even though the specific circumstances have changed, and the article in that sense is dated, there was enough that remains relevant even today to show it to interested readers. In fact, given recent developments, I was amazed that I was the author, since it seems hard to believe I could write something as cogent today. Whatever is the case, I hope reading it here will prove helpful and/or useful.
TWICE-TOLD TALES: NO HAPPY ENDINGS
We may never know, or at least never fully comprehend, what short-circuited synapse, what blip of corrupted information or neurochemical glitch inside the brain drove Russell Weston to gun down two Capitol police officers this July, or Michael Laudor to murder his fiancee only weeks earlier, and with her his unborn child.
Laudor was a Yale Law School graduate and activist on behalf of the mentally ill, and seems to be a man for whom adjectives like brilliant and charismatic crop up as reliably as Homeric epithets. Weston, in contrast, seems to have been largely unemployed and undistinguished, except as a loner with certain bizarre beliefs. Both men, long diagnosed with schizophrenia, had stopped taking medication. It also seems likely, at least in Michael Laudor's case, that if he had had adequate medication levels in his blood, Caroline Costello would be alive today, and Laudor a free man.
But why would someone so prodigiously intelligent, with such a promising future, stop taking the pills that were so essential to his well-being and sanity? Why would anyone? For Laudor, it wasn't from lack of insight, as the shrinks like to say; by 1995, he was speaking openly about having schizophrenia, even in an interview with the New York Times. He knew he was ill and must have known, intellectually at least, the risks he was taking.
The information about Weston is sketchy at best, but it is clear that he had little effective follow-up after his discharge from a Montana state hospital.
I cannot speak for Laudor, much less for Weston, but after more than 20 years of struggling with schizophrenia, I have learned that the waxing or waning of symptoms is often as unpredictable to patients as to physicians. Relapses are usually caused by many factors but my guess is that Laudor's relapse was induced by his success. Easily overwhelmed by stimulation or ordinary stress, as are many people with schizophrenia, and not recognizing his limits, or not accepting them, he may have over-extended himself, with tragic consequences.
Hold it! I can hear the objection: Most people occasionally over-extend themselves, yet they don't commit murder.
But by at least one criterion, Michael Laudor and Russell Weston are not most people: most people don't suffer from schizophrenia.
Although it doesn't seem that Weston had any opportunity to try the newest medications, Laudor was taking risperidone, one of the new antipsychotic wonder drugs. He appeared normal, more or less unimpaired. But because he was so competent, people may have forgotten the shadow cast over his life by an incurable mental illness that even the best drugs treat imperfectly.
Schizophrenia is a brain disease, as anyone who is up to date will tell you. But the brain is the seat of the mind and the mind the source of one's self and of all that makes us human. To suggest that such an illness, with its profound impact on a person' s mind and sense of self, is a biochemical imbalance no more troublesome than diabetes, is to invite cruel, though unintended and unforeseen, consequences. Russell Weston Jr. coped largely by keeping to himself. But the same was not true for Michael Laudor, who seemed to be outgoing by nature and to enjoy the spotlight. But because effectively treated schizophrenia can be controlled, and therefore concealed, the impact of the disability it inflicts is frequently discounted.
Imagine, if you can, that you have schizophrenia, as more than 2.5 million Americans do. The older typical medications, most of them similar to Thorazine, are not only less effective, but often produce side effects like the infamous Thorazine shuffle, as well as tremor, dry mouth, weight gain, an excruciating physical restlessness, and for some, the disfiguring disorder known as tardive dyskinesia. I suspect that Weston, like many, found this cure worse than the disease, if he believed he was ill at all.
But imagine that after years of illness, a new medication alleviates the worst of your symptoms, as it seems to have for Laudor. If you've always been a high achiever, you push ahead. Soon there's a lucrative book proposal, a million-dollar-plus movie deal. You've gotten engaged, your fiancee is pregnant and you're being hailed as a role model for all mentally ill people, a source of inspiration and hope. And yes, it is a thrill, it's huge, it's exciting and you would do it all, if only you could...
But the same miracle drug that helps you function makes you tire easily, gain weight and sleep more than you'd like. Maybe you feel you can't ask for a breather because if others cope with the pressure, you should be able to as well and if you admit to being less than capable, you'll disappoint people who are counting on you.
Wondering how you could better manage to live up to the demands success has imposed, it occurs to you -- as it will at some point to most people with schizophrenia -- that if you temporarily stop taking your medication, maybe you could catch up, get some work done. At first, you cut back on your pills just a little, but it snowballs until you're no longer taking any. Whether you're Michael Laudor or Russell Weston Jr. the stage at this point is set for disaster.
If something can be learned from these tragedies to help avert a next time, it may lie, first, in acknowledging the often agonizing side effects of standard medications, which are inexpensive and therefore the only option for most cash-strapped state hospitals. Then society needs to acknowledge that if the side effects of medication *feel* intolerable, the likelihood is enormous that patients -- with or without insight -- will stop taking them, and be reluctant to return to treating physicians for fear of being forced to do so.
And finally to recognize the terrible irony of Laudor's situation. While the public celebrated him as a shining exemplar of what a person with schizophrenia can achieve, it seems simultaneously to have treated him as if he no longer suffered from mental illness at all, and certainly not from the serious but less visible vulnerabilities that come with the package. In short, he was acceptable as a ìschizophrenia poster boy, but only so long as he wasn't noticeably schizophrenic!
Russell Weston Jr. and Michael Laudor have a chronic illness that by its nature can obscure one's judgment, including the ability to evaluate one's own mental health. Sane as he apparently seemed until a few weeks ago, Laudor was not in recovery, he was in treatment. Weston was as isolated by his illness as by Montana's wilderness.
My sense, and my sorrow, is that both might have been better served by someone who more vigilantly monitored the build-up of stresses, both external and internal, knowing how schizophrenia works, how the sufferer is often the last to recognize when enough is enough.
(I welcome any public comments on this piece, but readers who prefer to communicate privately may contact me at pamwagg@cox.net)
COMMENT:
AUTHOR: Paul Winkler
EMAIL: paul.winkler@cogeco.ca
Ms Wagner, the message in this 1998 article can NEVER be retold too often. Far from being the product of "cheating", on the contrary I wish it were possible to legislate every publication in the land to reprint it quarterly on the front page.
Coming more from the bipolar side of the brain, I feel that the case histories of Russell Weston and Michael Laudor are very probably reflections of other people's cases whose mental illnesses are different, but similarly devastating. However, having read of unarmed schizophrenics being shot dead by Kingston, Ontario and Toronto police in recent years, I am of the opinion that public education is urgently required, as of last week.
Unless something improves, I can't help but feel it may be you or I who next heads down on the roller coaster to Hell, helpfully propelled by our angry, ignorant neighbours.
Thank you for making your valuable contribution. It's information like this which may yet save us.
-----
COMMENT:
AUTHOR: barb
DATE: 07/09/2004 11:12:25 PM
What a brillant and sad piece....I am amazed at this gift that you have to let us into the enormous struggle with this disease...Thanks for sharing and educating us, so that we in turn may be better people in the relationships with our schizophrenic loved ones.
-----
COMMENT:
AUTHOR: Paula Kirkpatrick
DATE: 07/08/2004 05:24:31 PM
No one knows better than you, Pam, of the many times horrific effects of "managing" your medication yourself, even though you feel fully capable of doing so.
I think this blog serves as a very important and informative vehicle that will hopefully prevent any of your readers with schizophrenia from experimenting with discarding their medication, even temporarily. The consequences could be far worse than the admittedly unpleasant side effects that inevitably accompany anti-psychotic meds. I feel you may have helped more people than you could possibly imagine with your bit of "cheating". I applaud your courage and your empathy.
Your most faithful
reader, Pesky
_____________________________________________
I realize this is "cheating" but a friend found this 1998 article I wrote for the Hartford Courant (which published it under another title) when he was cleaning up his apartment, and he brought it up for me to reread. I thought that even though the specific circumstances have changed, and the article in that sense is dated, there was enough that remains relevant even today to show it to interested readers. In fact, given recent developments, I was amazed that I was the author, since it seems hard to believe I could write something as cogent today. Whatever is the case, I hope reading it here will prove helpful and/or useful.
TWICE-TOLD TALES: NO HAPPY ENDINGS
We may never know, or at least never fully comprehend, what short-circuited synapse, what blip of corrupted information or neurochemical glitch inside the brain drove Russell Weston to gun down two Capitol police officers this July, or Michael Laudor to murder his fiancee only weeks earlier, and with her his unborn child.
Laudor was a Yale Law School graduate and activist on behalf of the mentally ill, and seems to be a man for whom adjectives like brilliant and charismatic crop up as reliably as Homeric epithets. Weston, in contrast, seems to have been largely unemployed and undistinguished, except as a loner with certain bizarre beliefs. Both men, long diagnosed with schizophrenia, had stopped taking medication. It also seems likely, at least in Michael Laudor's case, that if he had had adequate medication levels in his blood, Caroline Costello would be alive today, and Laudor a free man.
But why would someone so prodigiously intelligent, with such a promising future, stop taking the pills that were so essential to his well-being and sanity? Why would anyone? For Laudor, it wasn't from lack of insight, as the shrinks like to say; by 1995, he was speaking openly about having schizophrenia, even in an interview with the New York Times. He knew he was ill and must have known, intellectually at least, the risks he was taking.
The information about Weston is sketchy at best, but it is clear that he had little effective follow-up after his discharge from a Montana state hospital.
I cannot speak for Laudor, much less for Weston, but after more than 20 years of struggling with schizophrenia, I have learned that the waxing or waning of symptoms is often as unpredictable to patients as to physicians. Relapses are usually caused by many factors but my guess is that Laudor's relapse was induced by his success. Easily overwhelmed by stimulation or ordinary stress, as are many people with schizophrenia, and not recognizing his limits, or not accepting them, he may have over-extended himself, with tragic consequences.
Hold it! I can hear the objection: Most people occasionally over-extend themselves, yet they don't commit murder.
But by at least one criterion, Michael Laudor and Russell Weston are not most people: most people don't suffer from schizophrenia.
Although it doesn't seem that Weston had any opportunity to try the newest medications, Laudor was taking risperidone, one of the new antipsychotic wonder drugs. He appeared normal, more or less unimpaired. But because he was so competent, people may have forgotten the shadow cast over his life by an incurable mental illness that even the best drugs treat imperfectly.
Schizophrenia is a brain disease, as anyone who is up to date will tell you. But the brain is the seat of the mind and the mind the source of one's self and of all that makes us human. To suggest that such an illness, with its profound impact on a person' s mind and sense of self, is a biochemical imbalance no more troublesome than diabetes, is to invite cruel, though unintended and unforeseen, consequences. Russell Weston Jr. coped largely by keeping to himself. But the same was not true for Michael Laudor, who seemed to be outgoing by nature and to enjoy the spotlight. But because effectively treated schizophrenia can be controlled, and therefore concealed, the impact of the disability it inflicts is frequently discounted.
Imagine, if you can, that you have schizophrenia, as more than 2.5 million Americans do. The older typical medications, most of them similar to Thorazine, are not only less effective, but often produce side effects like the infamous Thorazine shuffle, as well as tremor, dry mouth, weight gain, an excruciating physical restlessness, and for some, the disfiguring disorder known as tardive dyskinesia. I suspect that Weston, like many, found this cure worse than the disease, if he believed he was ill at all.
But imagine that after years of illness, a new medication alleviates the worst of your symptoms, as it seems to have for Laudor. If you've always been a high achiever, you push ahead. Soon there's a lucrative book proposal, a million-dollar-plus movie deal. You've gotten engaged, your fiancee is pregnant and you're being hailed as a role model for all mentally ill people, a source of inspiration and hope. And yes, it is a thrill, it's huge, it's exciting and you would do it all, if only you could...
But the same miracle drug that helps you function makes you tire easily, gain weight and sleep more than you'd like. Maybe you feel you can't ask for a breather because if others cope with the pressure, you should be able to as well and if you admit to being less than capable, you'll disappoint people who are counting on you.
Wondering how you could better manage to live up to the demands success has imposed, it occurs to you -- as it will at some point to most people with schizophrenia -- that if you temporarily stop taking your medication, maybe you could catch up, get some work done. At first, you cut back on your pills just a little, but it snowballs until you're no longer taking any. Whether you're Michael Laudor or Russell Weston Jr. the stage at this point is set for disaster.
If something can be learned from these tragedies to help avert a next time, it may lie, first, in acknowledging the often agonizing side effects of standard medications, which are inexpensive and therefore the only option for most cash-strapped state hospitals. Then society needs to acknowledge that if the side effects of medication *feel* intolerable, the likelihood is enormous that patients -- with or without insight -- will stop taking them, and be reluctant to return to treating physicians for fear of being forced to do so.
And finally to recognize the terrible irony of Laudor's situation. While the public celebrated him as a shining exemplar of what a person with schizophrenia can achieve, it seems simultaneously to have treated him as if he no longer suffered from mental illness at all, and certainly not from the serious but less visible vulnerabilities that come with the package. In short, he was acceptable as a ìschizophrenia poster boy, but only so long as he wasn't noticeably schizophrenic!
Russell Weston Jr. and Michael Laudor have a chronic illness that by its nature can obscure one's judgment, including the ability to evaluate one's own mental health. Sane as he apparently seemed until a few weeks ago, Laudor was not in recovery, he was in treatment. Weston was as isolated by his illness as by Montana's wilderness.
My sense, and my sorrow, is that both might have been better served by someone who more vigilantly monitored the build-up of stresses, both external and internal, knowing how schizophrenia works, how the sufferer is often the last to recognize when enough is enough.
(I welcome any public comments on this piece, but readers who prefer to communicate privately may contact me at pamwagg@cox.net)
COMMENT:
AUTHOR: Paul Winkler
EMAIL: paul.winkler@cogeco.ca
Ms Wagner, the message in this 1998 article can NEVER be retold too often. Far from being the product of "cheating", on the contrary I wish it were possible to legislate every publication in the land to reprint it quarterly on the front page.
Coming more from the bipolar side of the brain, I feel that the case histories of Russell Weston and Michael Laudor are very probably reflections of other people's cases whose mental illnesses are different, but similarly devastating. However, having read of unarmed schizophrenics being shot dead by Kingston, Ontario and Toronto police in recent years, I am of the opinion that public education is urgently required, as of last week.
Unless something improves, I can't help but feel it may be you or I who next heads down on the roller coaster to Hell, helpfully propelled by our angry, ignorant neighbours.
Thank you for making your valuable contribution. It's information like this which may yet save us.
-----
COMMENT:
AUTHOR: barb
DATE: 07/09/2004 11:12:25 PM
What a brillant and sad piece....I am amazed at this gift that you have to let us into the enormous struggle with this disease...Thanks for sharing and educating us, so that we in turn may be better people in the relationships with our schizophrenic loved ones.
-----
COMMENT:
AUTHOR: Paula Kirkpatrick
DATE: 07/08/2004 05:24:31 PM
No one knows better than you, Pam, of the many times horrific effects of "managing" your medication yourself, even though you feel fully capable of doing so.
I think this blog serves as a very important and informative vehicle that will hopefully prevent any of your readers with schizophrenia from experimenting with discarding their medication, even temporarily. The consequences could be far worse than the admittedly unpleasant side effects that inevitably accompany anti-psychotic meds. I feel you may have helped more people than you could possibly imagine with your bit of "cheating". I applaud your courage and your empathy.
Your most faithful
reader, Pesky
Delusions of Evil
This is the delusional thinking that plagued me at the time, and it is a problem that has continued up to this day, though clearly I now recognize that I should label it as a delusion, at least for you, the public...
DATE: 06/20/2004 03:56:49 AM
-----
This is what I have been thinking about, partly copied and pasted from a letter I recently wrote. I hope you won't mind my sharing it in this fashion.
What I want you to know is something that is TRUE in the most fundamental sense, though I know you will have trouble with it, trouble accepting it, largely because you are all so much the opposite. But the Truth, capital T, whether you believe it or not, is that I am evil and as a consequence, if I were to do the Right thing I would not write here or talk to friends, or allow myself even to be on this earth any longer. (I assure you that though the reasons are selfishness, cowardice and plain old fear, I refuse to do what I should do, and I promise I won't.)
More than that, the worst thing about this is the understanding that nothing matters, nothing alters this fundamental truth, not even whatever little I have ever done that might be considered kind, generous, caring and so forth, not even trying to be the saint I once wanted to be, the child who did things without wanting credit for them, acts of charity (as in the Latin, caritas) and other stuff, things that, by the way, adults inevitably spoiled the purity of by noticing and admiring. Oh never mind, it doesn't matter, and even if it did, the whole point is that I shouldn't tell you what I did or even what I do now. Just trust that I once did my best to be as Good as possible, to help people and be as unselfish as I could (though this may seem utterly unbelievable now, I suppose). This has always been very important to me, as it continues to be...
But to finish the thought, what I understand is this: no matter what I have done, no matter what I do, no matter how charitable, kind or unselfish the act, NOTHING can ever compensate for the evil that comprises my essence, my most fundamental self and being, NOTHING. That's what makes me feel so sad and hopeless: the uselessness of it all in terms of changing what cannot be changed. I never wanted to be evil, I still don't, and I still try to make up for it. But nothing can change who and what I really am, nothing I do can atone or compensate for my evil in any way. And that fills me with despair, the utter futility of trying to be forgiveable.
I know that, at least in Christianity, forgiveness CAN'T be earned, that no one actually deserves it; one simply gets it for free, literally by the grace of God. But even such a gift as this is forbidden me, completely beyond reach; I can't be forgiven because I am too conscious, I know too much, I understand my essential self, and therefore have no excuses. I'm not able to say: I didn't know, I didn't understand...Because in fact I do understand and am conscious of everything. Therefore I must be Satan, the one and only completely unforgiveable soul on this planet.
You should understand by the way that being Satan is something you're born to, not something you will, not something you choose. But you cannot do anything to change it. You are evil, and all the good things you try to do will never make up for that, no matter how secret, how selfless, how kind or loving or charitable. All I know is that if I were as good as I profess I want to be (and should be), I would withdraw myself from everyone's presence forever, not write here again, so as not to infect anyone any longer. No one is safe; all are vulnerable, most of all those who claim not to need to worry about it.
NB: even though Satan, I am also human and like anyone else I want the usual comforts, the relief, if nothing else, of human company. So I continue on, selfish and evil, knowing nonetheless that the world could be purified and at peace, but only were I gone.
That's the unvarnished truth of the matter, however terrible.
DATE: 06/20/2004 03:56:49 AM
-----
This is what I have been thinking about, partly copied and pasted from a letter I recently wrote. I hope you won't mind my sharing it in this fashion.
What I want you to know is something that is TRUE in the most fundamental sense, though I know you will have trouble with it, trouble accepting it, largely because you are all so much the opposite. But the Truth, capital T, whether you believe it or not, is that I am evil and as a consequence, if I were to do the Right thing I would not write here or talk to friends, or allow myself even to be on this earth any longer. (I assure you that though the reasons are selfishness, cowardice and plain old fear, I refuse to do what I should do, and I promise I won't.)
More than that, the worst thing about this is the understanding that nothing matters, nothing alters this fundamental truth, not even whatever little I have ever done that might be considered kind, generous, caring and so forth, not even trying to be the saint I once wanted to be, the child who did things without wanting credit for them, acts of charity (as in the Latin, caritas) and other stuff, things that, by the way, adults inevitably spoiled the purity of by noticing and admiring. Oh never mind, it doesn't matter, and even if it did, the whole point is that I shouldn't tell you what I did or even what I do now. Just trust that I once did my best to be as Good as possible, to help people and be as unselfish as I could (though this may seem utterly unbelievable now, I suppose). This has always been very important to me, as it continues to be...
But to finish the thought, what I understand is this: no matter what I have done, no matter what I do, no matter how charitable, kind or unselfish the act, NOTHING can ever compensate for the evil that comprises my essence, my most fundamental self and being, NOTHING. That's what makes me feel so sad and hopeless: the uselessness of it all in terms of changing what cannot be changed. I never wanted to be evil, I still don't, and I still try to make up for it. But nothing can change who and what I really am, nothing I do can atone or compensate for my evil in any way. And that fills me with despair, the utter futility of trying to be forgiveable.
I know that, at least in Christianity, forgiveness CAN'T be earned, that no one actually deserves it; one simply gets it for free, literally by the grace of God. But even such a gift as this is forbidden me, completely beyond reach; I can't be forgiven because I am too conscious, I know too much, I understand my essential self, and therefore have no excuses. I'm not able to say: I didn't know, I didn't understand...Because in fact I do understand and am conscious of everything. Therefore I must be Satan, the one and only completely unforgiveable soul on this planet.
You should understand by the way that being Satan is something you're born to, not something you will, not something you choose. But you cannot do anything to change it. You are evil, and all the good things you try to do will never make up for that, no matter how secret, how selfless, how kind or loving or charitable. All I know is that if I were as good as I profess I want to be (and should be), I would withdraw myself from everyone's presence forever, not write here again, so as not to infect anyone any longer. No one is safe; all are vulnerable, most of all those who claim not to need to worry about it.
NB: even though Satan, I am also human and like anyone else I want the usual comforts, the relief, if nothing else, of human company. So I continue on, selfish and evil, knowing nonetheless that the world could be purified and at peace, but only were I gone.
That's the unvarnished truth of the matter, however terrible.
ECT (Electroshock Treatments): Humane or Inhumane?
In April 2004 I came home after a three month stay and ECT in a Connecticut hospital. This is my account of it in two relatively brief blog entries plus the comments that accompanied it. I did not enter the comments that preceded it, which came in the wake of my long absence, but they were many.
-----
After three months of an in-patient stay, I am thoroughly sick of hospitals. In an out of restraints and room seclusion innumerable times, on one-to-one with a sitter for weeks, having more than 13 ECT treatments, half by court order and deemed necessary by my sister and conservator, it was a miserable time all around right up to the last day there. I emphatically do not recommend it! I would like to get back to regularly blogging, but for now simply want to announce that I am home and ready to resume where I left off. I did do a radio interview by phone while at St Raphaelís, with Bill Lichtenstein's INFINITE MIND series (*in 2008 BL's series was removed from NPR after discovery of a hidden conflict of interest between the main psychiatrist in it being paid by drug companies and the promotion of certain drug-related psychiatric prescriptives, which could no longer be seen as unbiassed or objective). You can find it by doing a google search for Infinite Mind, then once at the Welcome screen, doing a search for FOUR LIVES and clicking on the link that allows you to listen on-line. Any feedback from listeners will be greatly appreciated. My twin sister and I are featured in the second half of the hour-long show. But for now, here endeth my 14th blog entry, short as it is, with promises to resume at greater length ASAP. Glad to be home and back on-line!
____________________________
I had a chaplain friend in the hospital who said that saying Fuck God was at least a relationship, and a meaningful one. Hope this doesn't overly offend anyone. But read the poem and you'll see how I mean it.
BURNING BRIDGES
By Pamela Spiro Wagner
"Fuck God," you say, the worst thing
you can think of, and "Jesus F. Christ!"
when everyone knows what blasphemy
the F stands for. And because the lightning bolt
doesn’t strike you down as you’ve been
promised, you decide he, or she, if God,
doesn’t much cut it in the omnipotence
department. You would smack anyone else
who said such a thing, meaning
you, yet God doesn’t even send a thunderclap
or an ominous massing of clouds
off to the northeast just to remind you
Who’s Who.
So now you stand sheepishly
in church between the pews while others do
things you’ve completely forgotten, mumbling
the Lord’s Prayer which is all you have not,
and pray no one you knew as an atheist
sees you with your head in a hymnal.
God you swore off as a militant teen and are ashamed
to be seen going back to just for succor
in a time when all your friends
nod at you in the street but won’t stop
to speak except to explain prior engagements
like the house fire they’re running
towards or from, or the big C
they had an MRI for with ambiguous results.
Even death won’t shake them
from the strenuousness of their disbelief.
They’re convinced God is for children and idiots
with substandard IQ’s or people who need
their heads examined. So in church, kneeling
because others are kneeling, you examine
your head for shit-for-brains
when through the open door tumbles
a small bird, landing on your shoulder,
in its beak it bears a twig,
and in its eyes a look you almost recognize.
ANOTHER ADDITION to Blog Entry:
My chaplain friend says I am courageous to dread ECT as much as I do and yet submit to it, but I’m going to disappoint her in that, because despite being court-ordered to treatment sessions, I’m quitting any but the most forced participation and even that I shall do my best to sabotage. I can’t tolerate it any longer; it is a torment going to sleep and an even greater one waking up in enormous if amorphous distress and confusion, and it later fills my days with nausea, headache and olfactory hallucinations. I simply cannot see how unlimited once-monthly sessions can benefit me, at least not any more than they supposedly already have. And the dread discolors my days for weeks in advance. I don’t care that it’s the best they can offer me right now: I don’t want it and don’t feel I need it or that the benefits outweigh the costs and/or uncertainties. And if they try to send the police after me (since I shall neither arrange a ride nor the required daily companion) I shall simply eat a large breakfast, effectively sabotaging any efforts on their part since I know they cannot give me anesthesia on a full stomach. That is how I thwarted them in the hospital when I wanted to refuse: I’d simply grab some food from the kitchen and quickly down it before they could stop me, and that short-circuited the day’s treatment session.
If I have to, if things start breaking down seriously, I can take a low dose of Zyprexa, which though it induces weight gain, is preferable to ECT’s horrors. And there’s no proof that I shall need that at all, since I am quite compliant on my Geodon and several mood stabilizers. I just can no longer live in this constant state of dread and fear, not when I know how to alleviate them and when I see little use in allowing such a state to continue.
Let me describe a session for you, just in case there are those of you who have never experienced it before.
First all of all, no food or drink after midnight (effectively after dinner) and no anti-convulsants the night before, no medications on the morning the treatment is scheduled. Nothing by mouth at all. Then you arrive at the clinic and the first thing they do is give you a shot of Robinal to dry up any oral or bodily secretions that might interfere with the ECT session in some way. If you’re lucky, they can take you in a half hour later. Then you get up on the stretcher and lie down with your head on this little pillow and they start searching for an appropriate vein into which they will direct the anesthesia. Meanwhile, they squeeze some electrical jelly onto a headstrap and tighten that around your forehead. They place some electrical detection pads and leads on your chest as well and once the IV is inserted tell you you’ll be going off to sleep soon. Then you smell/taste something awful as the anesthesia briefly registers before you lose consciousness. Nothingness follows, until the nurse shakes you awake telling you it’s all over, the treatment has been done and you’re almost ready to go home. You’re moaning, half asleep still, and uncertain the worst is past, and it takes you some time before you’re conscious enough and steady enough on your feet to get down off the treatment table and toddle on through to where your companion is waiting for you. Several times I’ve retched immediately, though not every time. I know I’m never quite sure I’ve actually had the treatment or if they are still making me wait for it, interminably and cruelly. The anesthesia smell follows you for quite a while, and though they counsel one to eat a light breakfast, eating is the last thing on my mind. All I want to do is lie down and sleep off my headache and queasy stomach. I don’t feel immediately better as they claim I look (I think that is wishful thinking on their parts) and in fact I’m not sure I’ve felt better at all after session #13 or so. I’m not convinced I wouldn’t have gotten just as much better with some closer nursing contacts and some kinder people to talk to during the last 3 months.
Anyhow, that's my brief synopsis of an ECT treatment session. I know it doesn’t sound so terrible, but to me it is frightening in the extreme and I want no more part of it. If EP-MRI’s were available I’d jump to use them as they’ve been shown to be far less invasive and just as effective (at least according to a Scientific American article last month.) But so far no one’s offering them. So I’m stuck with either accepting or rejecting ECT and my choice is now to reject the treatment as not worth the cost/benefit ratio. I know some people will disagree strenuously, but they are they and can tolerate what has become intolerable to me, and of little obvious benefit. God bless them. They are perhaps better people than I am, but I’ve reached the end of my rope and the end of believing that this is something worthwhile doing.
seeLink to Wordpress Wagblog post on ECT
-----
After three months of an in-patient stay, I am thoroughly sick of hospitals. In an out of restraints and room seclusion innumerable times, on one-to-one with a sitter for weeks, having more than 13 ECT treatments, half by court order and deemed necessary by my sister and conservator, it was a miserable time all around right up to the last day there. I emphatically do not recommend it! I would like to get back to regularly blogging, but for now simply want to announce that I am home and ready to resume where I left off. I did do a radio interview by phone while at St Raphaelís, with Bill Lichtenstein's INFINITE MIND series (*in 2008 BL's series was removed from NPR after discovery of a hidden conflict of interest between the main psychiatrist in it being paid by drug companies and the promotion of certain drug-related psychiatric prescriptives, which could no longer be seen as unbiassed or objective). You can find it by doing a google search for Infinite Mind, then once at the Welcome screen, doing a search for FOUR LIVES and clicking on the link that allows you to listen on-line. Any feedback from listeners will be greatly appreciated. My twin sister and I are featured in the second half of the hour-long show. But for now, here endeth my 14th blog entry, short as it is, with promises to resume at greater length ASAP. Glad to be home and back on-line!
____________________________
I had a chaplain friend in the hospital who said that saying Fuck God was at least a relationship, and a meaningful one. Hope this doesn't overly offend anyone. But read the poem and you'll see how I mean it.
BURNING BRIDGES
By Pamela Spiro Wagner
"Fuck God," you say, the worst thing
you can think of, and "Jesus F. Christ!"
when everyone knows what blasphemy
the F stands for. And because the lightning bolt
doesn’t strike you down as you’ve been
promised, you decide he, or she, if God,
doesn’t much cut it in the omnipotence
department. You would smack anyone else
who said such a thing, meaning
you, yet God doesn’t even send a thunderclap
or an ominous massing of clouds
off to the northeast just to remind you
Who’s Who.
So now you stand sheepishly
in church between the pews while others do
things you’ve completely forgotten, mumbling
the Lord’s Prayer which is all you have not,
and pray no one you knew as an atheist
sees you with your head in a hymnal.
God you swore off as a militant teen and are ashamed
to be seen going back to just for succor
in a time when all your friends
nod at you in the street but won’t stop
to speak except to explain prior engagements
like the house fire they’re running
towards or from, or the big C
they had an MRI for with ambiguous results.
Even death won’t shake them
from the strenuousness of their disbelief.
They’re convinced God is for children and idiots
with substandard IQ’s or people who need
their heads examined. So in church, kneeling
because others are kneeling, you examine
your head for shit-for-brains
when through the open door tumbles
a small bird, landing on your shoulder,
in its beak it bears a twig,
and in its eyes a look you almost recognize.
ANOTHER ADDITION to Blog Entry:
My chaplain friend says I am courageous to dread ECT as much as I do and yet submit to it, but I’m going to disappoint her in that, because despite being court-ordered to treatment sessions, I’m quitting any but the most forced participation and even that I shall do my best to sabotage. I can’t tolerate it any longer; it is a torment going to sleep and an even greater one waking up in enormous if amorphous distress and confusion, and it later fills my days with nausea, headache and olfactory hallucinations. I simply cannot see how unlimited once-monthly sessions can benefit me, at least not any more than they supposedly already have. And the dread discolors my days for weeks in advance. I don’t care that it’s the best they can offer me right now: I don’t want it and don’t feel I need it or that the benefits outweigh the costs and/or uncertainties. And if they try to send the police after me (since I shall neither arrange a ride nor the required daily companion) I shall simply eat a large breakfast, effectively sabotaging any efforts on their part since I know they cannot give me anesthesia on a full stomach. That is how I thwarted them in the hospital when I wanted to refuse: I’d simply grab some food from the kitchen and quickly down it before they could stop me, and that short-circuited the day’s treatment session.
If I have to, if things start breaking down seriously, I can take a low dose of Zyprexa, which though it induces weight gain, is preferable to ECT’s horrors. And there’s no proof that I shall need that at all, since I am quite compliant on my Geodon and several mood stabilizers. I just can no longer live in this constant state of dread and fear, not when I know how to alleviate them and when I see little use in allowing such a state to continue.
Let me describe a session for you, just in case there are those of you who have never experienced it before.
First all of all, no food or drink after midnight (effectively after dinner) and no anti-convulsants the night before, no medications on the morning the treatment is scheduled. Nothing by mouth at all. Then you arrive at the clinic and the first thing they do is give you a shot of Robinal to dry up any oral or bodily secretions that might interfere with the ECT session in some way. If you’re lucky, they can take you in a half hour later. Then you get up on the stretcher and lie down with your head on this little pillow and they start searching for an appropriate vein into which they will direct the anesthesia. Meanwhile, they squeeze some electrical jelly onto a headstrap and tighten that around your forehead. They place some electrical detection pads and leads on your chest as well and once the IV is inserted tell you you’ll be going off to sleep soon. Then you smell/taste something awful as the anesthesia briefly registers before you lose consciousness. Nothingness follows, until the nurse shakes you awake telling you it’s all over, the treatment has been done and you’re almost ready to go home. You’re moaning, half asleep still, and uncertain the worst is past, and it takes you some time before you’re conscious enough and steady enough on your feet to get down off the treatment table and toddle on through to where your companion is waiting for you. Several times I’ve retched immediately, though not every time. I know I’m never quite sure I’ve actually had the treatment or if they are still making me wait for it, interminably and cruelly. The anesthesia smell follows you for quite a while, and though they counsel one to eat a light breakfast, eating is the last thing on my mind. All I want to do is lie down and sleep off my headache and queasy stomach. I don’t feel immediately better as they claim I look (I think that is wishful thinking on their parts) and in fact I’m not sure I’ve felt better at all after session #13 or so. I’m not convinced I wouldn’t have gotten just as much better with some closer nursing contacts and some kinder people to talk to during the last 3 months.
Anyhow, that's my brief synopsis of an ECT treatment session. I know it doesn’t sound so terrible, but to me it is frightening in the extreme and I want no more part of it. If EP-MRI’s were available I’d jump to use them as they’ve been shown to be far less invasive and just as effective (at least according to a Scientific American article last month.) But so far no one’s offering them. So I’m stuck with either accepting or rejecting ECT and my choice is now to reject the treatment as not worth the cost/benefit ratio. I know some people will disagree strenuously, but they are they and can tolerate what has become intolerable to me, and of little obvious benefit. God bless them. They are perhaps better people than I am, but I’ve reached the end of my rope and the end of believing that this is something worthwhile doing.
seeLink to Wordpress Wagblog post on ECT
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?
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.
-
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.
-----
COMMENT:
AUTHOR: Sadaf
EMAIL: saringheights@gmail.com
IP: 210.214.75.95
URL:
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...
-----
COMMENT:
AUTHOR: Sadaf
EMAIL: soaringheights@gmail.com
IP: 210.214.75.95
URL:
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.
Sadaf
-----
COMMENT:
AUTHOR: Spinelli
EMAIL: joycechung@hotmail.com
IP: 209.139.212.193
URL:
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.
-----
COMMENT:
AUTHOR: puzli
EMAIL: puzliagain@yahoo.com
IP: 203.122.61.30
URL: http://puzli.tripod.com/blog
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
puzli
-----
COMMENT:
AUTHOR: Nacon Four
EMAIL: naconfour@aol.com
IP: 64.12.97.9
URL:
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
-----
COMMENT:
AUTHOR: ZelfZee
EMAIL: zelfzee@aol.com
IP: 205.188.209.167
URL: http://members.aol.com/zelfzee/myhomepage/zelfzee.html
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:
http://members.aol.com/zelfzee/myhomepage/zelfzee.html
thanks & take care,
ZelfZee
-----
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.
-----
COMMENT:
AUTHOR: Sadaf
EMAIL: saringheights@gmail.com
IP: 210.214.75.95
URL:
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...
-----
COMMENT:
AUTHOR: Sadaf
EMAIL: soaringheights@gmail.com
IP: 210.214.75.95
URL:
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.
Sadaf
-----
COMMENT:
AUTHOR: Spinelli
EMAIL: joycechung@hotmail.com
IP: 209.139.212.193
URL:
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.
-----
COMMENT:
AUTHOR: puzli
EMAIL: puzliagain@yahoo.com
IP: 203.122.61.30
URL: http://puzli.tripod.com/blog
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
puzli
-----
COMMENT:
AUTHOR: Nacon Four
EMAIL: naconfour@aol.com
IP: 64.12.97.9
URL:
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
-----
COMMENT:
AUTHOR: ZelfZee
EMAIL: zelfzee@aol.com
IP: 205.188.209.167
URL: http://members.aol.com/zelfzee/myhomepage/zelfzee.html
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:
http://members.aol.com/zelfzee/myhomepage/zelfzee.html
thanks & take care,
ZelfZee
-----
Subscribe to:
Posts (Atom)