My Letter to the Office of Civil Rights in Boston

Dear Keisha Edwards,  JFK Boston Office Of Civil Rights

I am appealing to your humanity to please read this and if you cannot help me to show it to someone at the OCR who will. In GOD’s NAME  I am suffering from an extreme traumatic reaction to what they did to me, both at the IOL, which case you dismissed, and from my recent stay at New Britain General. How can your office simply ignore this sort of abuse, especially when I tell you that it is routine and SOP there, even though what they did to me may have been worse than the norm by virtue of its excess.

Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, deliberately misdiagnosed me, who have been on Social Security Disability and SSI since 1980. I was admitted to his unit with a decades long dx of schizophrenia, as well as PTSD since 2009 (largely due to in-hospital care-provider abuse of seclusion and restraints), but he immediately secondarily  (though he made it clear that he considered it primary) diagnosed Borderline Personality Disorder, against all the evidence, which he took pains to gather from my family and outside providers. I believe he did this in order to justify treating me with isolation for three weeks, an inhumane Behavioral Treatment Plan, multiple uses of four-point restraints and ordering me forcibly dragged into a horrific supermax seclusion cell, into which I might have to run to avoid being propelled there bodily by the guards (who were actually given carte blanche as the RNs informed me to inflict physical pain in order to subdue me quickly, because the nurses themselves were not permitted to lay hands on a patient!).Once there, I was then stripped naked of all my clothing "for safety's sake.” 

In the Supermax cell, HOCC's invarying protocol demanded that no matter how calmly or how voluntarily I went in, I would be injected with three "punishment drugs,”  drugs which at times were not on my normal list of medications, e.g. Prolixin, which I haven't taken for decades and to which I have a terrible reaction. My Advance Directive, which I gave them on admission, states that i was not to be given any such “typical neuroleptic” like Prolixin/fluphenazine because of this reaction..Also, despite my repeated assurance that I would "take my punishment drugs” voluntarily and without resistance, I was often pushed onto my face, prone, on the mattress, and held down by several guards until I couldn't breathe, and forcibly injected.

Note that although the Centers for Medicare and Medicaid require "imminent danger of causing severe bodily harm to self or others, or even property"  before any patient is put into seclusion of four point rsrtaints,  I was routinely secluded, stripped naked by male guards, and four-point restrained in a spread-eagle maximum exposure position, for being a nuisance and a disruptive presence to the appropriate unit "milieu." Once, when I told the guards these requirements, the "rules" for secluding a patient, they seemed surprised...and even reluctant to continue, though of course they had to follow orders and did so. They were always willing to inflict pain on me to ensure my rapid compliance, even when I verbally assured them I would do so. 

You may be surprised to hear that in point of fact, when I actually was in acute danger of self-harm, due to command hallucinations, and was observed by many nurses slicing my face with a sharp piece of plastic, drawing blood that streamed down my face and left open wounds, this behavior was actually ignored and even savagely mocked! So it was clearly not the case that their secluding me or stripping me had anything whatsoever to do with concerns for my physical safety...

In addition, Dr Balkunas, quite despite his apparent belief in the accuracy of his diagnosis of a personality disorder, never treated me for it, not with anything but antipsychotic drugs. Although he charged Medicare more than $300.00 per session each morning,  he saw me for a one-sentence  “How are you?” drive-by Q and A each morning. He largely ignored my presence on the unit. Worse, whenever I was put in seclusion or four -point restraints I would BEG for my 1-hour face-to-face interview for evaluation of the appropriateness of the intervention, but they routinely denied me that right, saying that they had 24 hours before I needed to see anyone…!

His whole rationale for committing me to the State Hospital was that "antipsychotic drugs take time to work", so I will send you there until  yours do...Mind you, he never changed my meds. so I stayed on the same meds and the same dosages I came in on and that i had never stopped taking,so what was it that he thought “needed to work? Just torture? 

Please help me, I cannot go on this way. NO ONE in Connecticut is charged with assisting me. NO LEGAL Agency has  any interest in me…NONE. Believe me I have tried for years to find some help with this sort of abuse, but there is absolutely no one. Not even the Dept of Protection and Advocacy for the mentally ill or those charged with protecting the elderly!

Sincerely,

Pamela S Wagner

PLEASE NOTE that I have trouble speaking, and while I can take a phone call i am using text to speech software. This is effective but it takes a little time for me to type and allow the iPad to speak my words. PLEASE be patient if you call me in the next day or so...

TELEPHONE: 860...

ALSO you might be interested, Dear Reader, in my Google + review, written shortly after that hospital stay of Dr Michael Balkunas. Either the link or the review itself should appear here.

https://plus.google.com/109362057307724485552/posts/ak5CU7s3qL1

 #Torture

 

Just wanted to link this to my recent blog post in which I fake thank the doctor for his torturing me at New Britain General Hospital this past spring 2014 and then accusing me of lying to him about what was happening there...since he was not on the unit most of the time, he never knew!

Pamela Spiro Wagner

 reviewed:

Dr. Michael E. Balkunas, MD

100 Grand St, New Britain, CT 06052

Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, deliberately misdiagnosed me, who had been admitted with a decades long dx of schizophrenia and PTSD since 2009, with the secondary diagnosis of Borderline Personality Disorder, against all the evidence, which he took pains to gather from my family and outside providers. I believe he did this in order to justify treating me with an inhumane Behavioral Treatment Plan, four-point restraints and the use of a horrific seclusion cell, into which I might run to avoid being dragged there bodily by the security guards. I was then stripped of all my clothing "for safety's sake." Once there, procedure demanded that no matter how calm, how voluntarily I went in, I would be injected with three "punishment drugs" which at times were not even on my normal list of medications, e.g. Prolixin, which I haven't taken for decades and to which I have a terrible reaction. Despite my insistence that I would "take the punishment drugs" voluntarily, I was often pushed onto my face, prone, on the mattress, and held down until I couldn't breathe, and forcibly injected.

Note that I was never secluded or four-pooint restrained for "imminent danger of causing severe bodily harm to self or others, or even property" as the Centers for Medicare and Medicaid require, but for being a nuisance and a disruptive presence to the appropriate unit "milieu." Once, when I told the guards the "rules" for secluding a patient, they seemed surprised...and even reluctant to continue, though of course they had to follow orders and did so. They were always willing to inflict pain on me to ensure my rapid compliance, even when I verbally assured them I would do so.

Also, Dr Balkunas, quite despite his apparent belief in the accuracy of his diagnosis of a personality disorder, never treated me for it, not with anything but antipsychotic drugs. In fact his whole rationale for committing me to the State Hospital was that "antipsychotic drugs take time to work", so we will send you there until they do...Mind you, he never changed my meds. I stayed on the same meds and the same dosages, of the very same ones I came in on, the entire time I spent there...

Dr Michael Balkunas and the entire W-1 unit staff of Hospital of Central Connecticut (New Britain General Hospital) need to be re-educated, or better yet, lose lose their jobs and their licenses to practice.

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Pamela Spiro Wagner

5:50 AM

 

 

Here is the link to the blog post http://pamelaspirowagner.com/2014/10/23/thank-you-michael-edward-balkunas-md-for-everything/

Avatar Therapy Cures "Hearing Voices" Symptom in Schizophrenia: Does it Work?

Novel 'Avatar Therapy' May Silence Voices in Schizophrenia

Deborah Brauser

July 03, 2014 - From Medscape (see link below)

LONDON ― A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.

Avatar therapy allows patients to choose a digital face (or "avatar") that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and "talks" through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.

In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.

In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.

"Opening up a dialogue between a patient and the voice they've been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations," lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.

"As the therapist, I'm sharing the patient's experience and can actually hear what the patient hears. But it's important to remind them that this is something that they created and that they are in a safe space," Dr. Leff told Medscape Medical Newsafter his presentation.

Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.

Regaining Control

According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.

Dr. Leff explained that this program started a little more than 3 years ago, after he had retired "and could start thinking clearly again." He had been interested in the phenomenon of phantom voices for more than 40 years.

"Our mind craves meaningful input. That's its nourishment. And if it's deprived of nourishment, it pushes out something into the outside world," he said. "The aim of our therapy is to give the patient's ego back its mastery over lost provinces of his mental life."

The researchers used the "off-shelf programs" Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.

In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.

After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.

Another patient chose a "red devil" avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.

For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.

The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.

Pocket Therapist

During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared. 

"We told them: It's like having a therapist in your pocket. Use it," said Dr. Leff.

All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to "soften up" and discuss issues rationally and even offer advice.

Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.

The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.

Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.

Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. "When we asked her why, she said, 'The voice now knows that if it talks to me, I'll talk back,' " said Dr. Leff.

"These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it," he added.

"The moment that a patient says something and the avatar responds differently than before, everything changes."

In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.

A bigger study with a proposed sample size of 140 is currently under way and is "about a quarter of the way complete," Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.

"In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study," write the investigators.

"One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study," they add.

"Fascinating" New Therapy

"I think this is really exciting. It's a fascinating, new form of therapy," session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.

Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research."I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we've ever done before."

She added that she will be watching this ongoing program "with great interest."

"I was very enthused to learn that more research is going on with this particularly complex group," said Dr. Kalidindi.

"This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it's fantastic."

International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.

Psychosis. 2014;6:166-176. Full text

Original Article From MEDSCAPE:

http://www.medscape.com/viewarticle/827797?nlid=60566_2051&src=wnl_edit_medn_psyc&uac=63563AN&spon=12

THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work...

and they really work for you, then don't listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the "anti-psychotic" pills you take (or I'll add in for good measure, god help us all, the "anti-depressant" pills) are doing what we were always told they were supposed to do. Or if you don't work or care for a family, if not, do you at least live a fulfilling single's life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who's to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if  research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen...most of them not drug related at all. One simply cannot worry about a "what if" future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don't need me, and you won't want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don't like your drugs and don't want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do,  forewarned is forearmed...This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told.  (I likely won't have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants...You could turn to MAD IN AMERICA by Robert Whitaker for a take on those -- just check out his chapter on Prozac for a taste...) It isn't that AP drugs do nothing at all. They do attack the brain's neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven't even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that's because it is as old as the hills and as tiring. You don't have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would "work" against schizophrenia. Because the theory was, both in ECT and insulin coma,  as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them "better" and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving...at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic ("brain seizing") drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. "Schizophrenia is an illness just like diabetes." That was the canard I was told in 1980 -- we are still being handed the same disgusting lie! -- when I was first officially diagnosed with the condition, or told the name to my face at any rate. "You'll never recover, and you will likely have relapses, but you won't be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn't a death sentence these days but it IS a life sentence..." So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn't know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn't read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist...which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart...You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for "schizophrenics." It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning's dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses...until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn't. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system's poverty and being sick. And once in a while that person's husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn't fall into the trap of SSDI  after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again...

But alas, that didn't happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two...

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren't mind, my sister has control of them! And I can't sleep, I can't sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I "needed" in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia...The rest, well, if it isn't everyone's history, it is a version of it. And  it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good...I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them...

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough,  you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don't respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation...So they did that, and they kept me in seclusion for weeks at a time...until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there....I had a life, yes, but it wasn't much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn't know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn't even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis... I don't have a bed, only a recliner I should not sleep in...I am a mess, and  I am also NOT going to continue to take my Abilify and Geodon much longer...I cannot. I cannot. I do not know what will  happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

.

Daniel Mackler's Amazing Movie About Recovery from Schizophrenia

If this video embeds as it is supposed to, it is am amazing hour and fifteen minute movie narrated by Daniel Mackler. I believe it is legally allowed to be embedded since I got it from Mackler's Youtube site (with the embed button). Please watch it. You won't be able to stop...All about recovery from schizophrenia without medications, not to mention the harm that medications do in terms of impeding recovery... The film features, among others, Joanne Greenberg of I NEVER PROMISED YOU A ROSE GARDEN fame, and Catherine Penney, RN who also recovered from severe schizophrenia largely without psychiatric drugs, with the help of Daniel Dormand MD.

Schizophrenia Medications - My Experience with the Atypical Antipsychotics

Although the first time I ever took a neuroleptic antipsychotic was in 1971 at age 18, I was prescribed them regularly starting in 1978 until 1993. I have taken almost every one available and they were almost universally awful, mostly because of devastating side effects. If they were effective, it was difficult to know because of these side effects, which made me refuse to take any one of them for long.

When Clozaril came along, the first atypical antipsychotic drug, I was one of the first Medicaid patients in CT to be put on it. Alas, I have to admit that I am unable to evaluate its efficacy in my case, because I experienced once again such side effects that despite 3 or 4 serious trials on it, I was relieved when my white cell count dropped so low that I was forced to stop taking it. I know that other people said I "did better" on clozapine, but they'd said that about Haldol and Thorazine and Prolixin yada yada yada when I'd suffered the agonies of hell on those. So whatever they thought, that it was worth it for me to suffer such side effects, meant little to me in the end. They were not in my body, and it never seemed to matter to them ("them" being largely the psychiatrist and various mental health "officials" supervising me) that I was in exquisite pain on any of the drugs so long as I took them.

As a result, when they told me that it was worth the side effects to continue taking the clozapine, I finally told the doctor I was seeing to "go soak your head." At which point, she summarily dumped me! Fine, fine. That wasn't exactly copacetic, as they used to say, but I got another and finally I was able to stop taking the drug when agranulocytosis seemed imminent. Then it was back to Prolixin for a few years, which was bad, but frankly not as agonizing as the Clozaril had been.

But what side effects did I have? Well, it turns out that I would have those same side effects some years later on Seroquel: after taking the drug at night I would within a half hour have  unbearable feelings of impending doom, the sense that if I closed my eyes to sleep I would without a doubt die that very night. It sounds trivial but it was one of the most horrifying feelings I have ever had to deal with. Then I found I could not swallow my own saliva, which was copious and spilled out onto my pillow by the "pailful" -- when I did fall into that deathly sleep I was so terrorized by, I would wake with slimy sheets and pillowcase. Did I mention sedation all day long, and weight gain? No? Well, there were those as well. It isn't just Zyprexa that is guilty of causing obesity and diabetes. Long before I took Zyprexa I had already started to gain weight, and I believe that was because of taking Clozaril for so many trial runs for so many months.

But then, after waiting until 1996, Zyprexa, that miracle drug for me, that drug from hell as it turned out to be as well, came out and changed my life for good, and for ill. I loved it, and I still do. But I would never take it again. If you have not read about my journey with this medication scroll down to earlier posts and look for "Schizophrenia and My Conflict about Taking Medication" which tells the tale.

After Zyprexa came Seroquel, and then Risperdal which had all those side effects and then some, including sedation so extreme that a friend considered me nearly comatose. In fact, every time I agreed to another trial on it and I took it for longer than two weeks at any dose, even as little as a half milligram, I ended up catatonic. The last time led to a hospitalization so traumatic that was it for risperidone.

Have you guessed by now that I have tried most of the atypicals available in the U.S. if not all of them? I am now on Abilify and Geodon which I will tell you about at the end of this post, but first I need to give you the lowdown about how I did on 1) Saphris, 2) Fanapt and 3) Latuda.

Saphris was from the start one of the most deadening drugs I have ever taken. Yes, the voices were drugged up and deadened. But it seemed to exacerbate all possible negative symptoms I ever had. I simply had no drive to do a thing but watch television all day long, smoke and look out the window. I did nothing else, barely even bothered to eat. In fact, I am going to do something I rarely do here, which is to post a poem that I have not yet published, despite the fact that it might mean I cannot do so elsewhere in the future, because I wrote it about the experience of taking Saphris, and the dullness and negative symptoms it induced.

DISTEMPER

A new pill for distempered minds leaves me myself,

untempered. Not that being less prone to tantrums

is a bad thing. For instance, I no longer snap and seize

at the fluorescent shatterings of daily living.

But this placidity borders on clinical torpor

so that even daytime television

seems like a worthwhile invention,

as good a way to spend sixteen hours as any other.

I’m awake all day and all night, too conscious --

thinking, thinking, not bored, but not quite interested enough

to put my hands or mind to any enjoyable task

while a K2 of necessities goes undone:

dishes, laundry, cat litter—all insurmountable molehills.

The ancient cathode ray flickers and the talkies chatter on.

Deep in my chair, smoking away five years of sobriety,

my drugged eyes fix six hours on “America’s Top Model”

and then on a woman heavy with twins who smiles

on her "Nineteen Kids and Counting."

A dozen should-dos fog me into lumbering up.

and I aim myself towards too many goals to count on,

but quickly all recede into a cave of twilight.

Time for “Junkyard Wars” on channel 101.

I sit back down, light another cigarette

and press on the remote.

 
Fanapt? I scarcely recall why I did not like the drug, but I do know that I barely took it a week before i nixed it. I think I could tell it was making me eat too much, which was the kiss of death almost before I could see if it helped me . One of my biggest phobias now, after becoming obese on Zyprexa, is that I will never let that happen to me again. It was simply too hard to get the weight off again, and I will not repeat that struggle or go through what it took to do so. Not if I have any say in it, which I damn well intend to.


Then we have Latuda, of which I once sang praises. You should know that I have had second thoughts and changed my mind about this drug. Oh, it did stop the voices and such very quickly, but it too induced a kind of grayness to life, an indifference and colorlessness that was painful. I could do nothing, even if I wanted to. I felt like nothing interested me. The only difference between Latuda and Saphris was that on Latuda I understood what I was missing, I knew that I wanted to want more, whereas on Saphris I simply didn't feel like doing anything, and forgot that life could hold much more. The latter state was much worse, but luckily someone picked up on it, and the dangers it held, and I got off it before it became a pattern.


When I was in the hospital this past summer for 6 weeks I might have been ready for discharge earlier, had I been willing to take either Zyprexa or Latuda, but I refused, because I knew perfectly well that once discharged I would adamantly refuse to continue either drug,As I pointed out, what was the point of getting started on a drug only to cease taking it the minute I got out of the hospital? It made no sense, especially were I to leave below my baseline, with the assumption that thte drug, being administered on the outside, was what was going to help me recover from the on-going psychosis. It simply made no sense to get me started on a drug I would refuse to take. 


Luckily the attending doctor, a very nice older woman from Rumania, got the point and even agreed with it, so though the stay was rough, largely because we had to deal with a lot of my reaction to the trauma I had experienced at two other hospitals the previous year, I was able to stay on Geodon and Abiify without adding another drug I wouldn't continue taking.


Now, as to those drugs, the combination of A and G: I consider them to be my "output" drugs, compared to Zyprexa, which was an "intake" drug. On Zyprexa I take in and attend to everything: reading, learning, and also food. I gobble everything down and retain it. I learn a great deal and I also become obese. On Abilify and Geodon, I do a lot, get a lot of work done, for they are my "output" drugs. I can control my appetite and do not feel as driven to eat. On this combination I write and write like mad, and I do art like there is no tomorrow. In fact, sometimes I cannot let go of my pen, but must write until my hand hurts...But taking in is of less importance. In fact, though, I have to force myself to read or eat and to read a book becomes a chore of the first order. This not good, but I have had to make the choice and it has been acceptable to me. 


All my life I have not been productive, due to schizophrenia. I have been an unproductive, non-functioning citizen. Finally, I can produce art and writing, and I revel in it, even though due to the horrible financial strictures of Medicare,  Social Security and Medicaid, and my own needs for housing, medical coverage, I am unable to get off any of them. This forces me and most disabled people to remain poor, essentially non-productive. Maybe I produce, but uselessly as I cannot earn a living. So I produce ina vacuum. I produce,  but I give everything away. I donate my sculptures to good causes, not a bad thing, and I save my "flat" pieces until such a time as I may be able to sell them, or trade them for useful items I need for my art or apartment. What else can I do, since I cannot earn income? It is a terrible bind, once which President Obama wanted to repair, but will not be permitted to do,  due to the politics of our time.


So, here is where I am now. I take Abilify with Geodon to temper the over-activating effects, the temper and irritability Abilify alone tends to induce, plus Lamictal, a mood stabilizer that I frankly use only to control what I've been told are temporal lobe seizures in the form of olfactory hallucinations; Topomax to reduce the frequency of migraines; Ritalin and Xyrem to treat narcolepsy, the second to increase delta sleep in order to reduce the need for the first. And Zoloft, to which I suspect I am addicted and need less for major depression than because I cannot get off it without rebound depression and suicidality..


All in all, these seem to work fairly well, however. If I have relapses, mostly I have to live with them, and wait for them to burn themselves out, because I won't take any other meds to stop them, and because increasing any of these drugs only adds side effects without actually helping the psychosis.


If my readers have any further questions, feel free to comment and ask them in your comment. I will reply personally or in another post.




TTFN (tata or good bye for now)

Interview with Dr Manny

My twin sister and I did this interview for Foxnews.com last year. While I generally consider Fox network as the "enemy," in this case I must tell you that the interviewer, Jessica Mulvihill, was one of the most prepared, and the interview itself one of the most interesting for me and thoughtful that I have undergone since the books came out. Also, while the interview is a little over a year old, the information is not really that dated, though some of the facts are inaccurate. For instance, DIVIDED MINDS is a memoir, not an "autobiographical novel," and I was not asked to leave medical school, as Dr Manny relates. Instead, I was hospitalized. When discharged  6 weeks later, I was given a leave of absence, but promised that I could return after a year off, if I had medical, which is to say, psychiatric "clearance," so to speak.

Interview on the Dr Manny Show

I want to add something to this post, which came to me after watching the interview another time. Although the incident alluded to again , the one about Kennedy's assassination being the start of my schizophrenia, is mentioned in my poetry book as well as in Divided Minds, my new psychiatrist has a take on it that I found immensely -- I dunno -- reassuring, and somehow right on the money. Dr C suggested, and it feels right to me, that although I heard voices and deeply felt responsible for JFK's death, highly sensitive pre-adolescent children can be impressionable and emotional, and often they may get so involved in a tragic event such the assassination that rocked the entire country, that they may indeed begin to blame themselves. She feels that instead of the incident indicating that I was in the prodrome of schizophrenia, that it was instead an extreme emotional state, but more or less "normal" for a sensitive kid going through a terrible time.

I cannot tell you what relief this take on the event gives me. Why, I do not know, but I feel better being able to see my childhood through this other lens. To be able to say that indeed the illness maybe did start later, rather than to have to try to figure out why there was such a long break between 6th grade's psychotic episode and 10th and 11th grade and certainly the breakdown in college. To see the Kennedy episode as something altogether different, and not prodromal at all, puts another spin on things. It is not that I think that childhood mental illness is something to be ashamed of, only that I did well in those days in other ways, though not in all ways, so to date schizophrenia from age 11 always felt a bit shaky, compared to later years when my ability to cope was so diminished.

Recovery, recovery, recovery

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.

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.

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.