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.

.

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.

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.

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?

Delusion or Fact?

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


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

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

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

Experience of schizophrenia

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

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

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

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

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

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

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

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