Schizophrenia and Temporal Lobe Epilepsy (cont.)

In my further reading on TLE I have learned that while “TLE hallucinations” can be ecstatic visions or the sight of threatening people or actually hearing voices, usually they are of brightly colored lights or visual distortions, like objects appearing larger or smaller than usual, hearing music, feeling insects running under one’s skin etc. In addition, there is the awareness that these are hallucinations, though not always. A personality seems to be associated with TLE, some people think, though it is not clear to me how established this is as fact. And some with TLE and without it claim that creativity is directly related to it. Hypergraphia, the compulsion to write, write, write is definitely associated with TLE, along with a compulsion to draw or do art or think/talk about religious subjects. Heightened emotional state but reduced sex drive. Something called “stickiness” is described, which I construe as a kind of tendency to glom onto a person or to exhibit an extreme loyalty. Also, there is seen irritability and gross personality change, rages, a tendency to fly off the handle or perform outrageous acts like stripping in public etc. 

 

In TLE you can have feelings of euphoria and floating as much as feelings of impending doom. A feeling of “rising into something” or of something rising through one’s body is a common concomitant of a TLE seizure or aura. An indescribable feeling according to many.  And you can have psychosis, chronic or acute.

interestingly, while EEG is notoriously poor at picking up TLE, there are often  punctate  signal hyperintensities (precisely the abnormalities I have had at least since Y2K) seen on MRI in those with TLE in the book I am reading — SEIZED, by Eva LaPlante.

Now I do not want to jump the gun, because too many of my symptoms have been chronic and disparate, not following a single pattern of seizure, whereas at least one authority claims that once you have one seizure, all others look similar. Indeed, while you might say that Grey Crinkled Paper arose from a seizure, and the jacksonian seizure with Novocaine were definite, and too the feelings of impending doom were also seizure activity  while I was taking Clozaril and other antipsychotic medications, the others, with different patterns yet, could not have been,since they were more varied even than those. The olfactory hallucinations had to have been seizure  associated too, but then where does it all stop, and where does the notion that one seizure sets the pattern for all others go?

 

And yet even conservatively I myself would count all those instances as seizures even if I were not going to count anything else as seizure-related right now…So  what to make of them, and the fact that ALL were so distinct and different from one another:?

 

Does it make the whole thing, the whole illness over all TLE or schizophrenia? Can you in fact have both, or does having TLE  suggest that the schizophrenia was a misdiagnosis all along?  And how does one know? Certainly, I have one trait that points towards the TLE diagnosis: I do well inbetween “attacks” of either illness, and seem to have not suffered any deterioration in brain function cognitively. Not massively. Though my memory and such is faulty, that is often the case in TLE itself!

I don’t have the slightest idea, but I suppose I will find out as the weeks go on and I continue to discuss it with Dr C, as I anticipate I will. I do plan to  see him once Dr O leaves… I liked him enough to do so at any rate, and I liked this idea enough too, to want to pursue it too. I    t will be very interesting to find out what happens, where it leads…If it redefines me entirely, I wonder how I will feel or deal with it?

 

 

 

Schizophrenia and Temporal Lobe Epilepsy

I want to begin by quoting two websites on the symptoms of each. First the Mayo Clinic on the symptoms of schizophrenia and then Richard Restak’s excellent article on TLE.

 

Schizophrenia Symptoms

By Mayo Clinic staff

In general, schizophrenia symptoms include:

* Beliefs not based on reality (delusions), such as the belief that there’s a conspiracy against you

* Seeing or hearing things that don’t exist (hallucinations), especially voices

* Incoherent speech

* Neglect of personal hygiene

* Lack of emotions

* Emotions inappropriate to the situation

* Angry outbursts

* Catatonic behavior

* A persistent feeling of being watched

* Trouble functioning at school and work

* Social isolation

* Clumsy, uncoordinated movements

In addition to the general schizophrenia symptoms, symptoms are often categorized in three ways to help with diagnosis and treatment:

Negative signs and symptoms

Negative signs and symptoms represent a loss or decrease in emotions or behavioral abilities. They may include:

* Loss of interest in everyday activities

* Appearing to lack emotion

* Reduced ability to plan or carry out activities

* Neglecting hygiene

* Social withdrawal

* Loss of motivation

Positive signs and symptoms

Positive signs and symptoms are unusual thoughts and perceptions that often involve a loss of contact with reality. These symptoms may come and go. They may include:

* Hallucinations, or sensing things that aren’t real. In schizophrenia, hearing voices is a common hallucination. These voices may seem to give you instructions on how to act, and they sometimes may include harming others.

* Delusions, or beliefs that have no basis in reality. For example, you may believe that the television is directing your behavior or that outside forces are controlling your thoughts.

* Thought disorders, or difficulty speaking and organizing thoughts, such as stopping in midsentence or jumbling together meaningless words, sometimes known as “word salad.”

* Movement disorders, such as repeating movements, clumsiness or involuntary movements.

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Cognitive symptoms involve problems with memory and attention. These symptoms may be the most disabling in schizophrenia because they interfere with the ability to perform routine daily tasks. They include:

* Problems making sense of information

* Difficulty paying attention

* Memory problems

Complex Partial Seizures Present Diagnostic Challenge

Quotes from Richard Restak’s article in Psychiatric Times (Sept 1,1995)

Since the condition [Temporal Lobe Epilepsy] may involve gross disorders of thought and emotion, patients… frequently come to the attention of psychiatrists. But since symptoms may occur in the absence of generalized grand mal seizures, physicians may often fail to recognize the epileptic origin of the disorder.

In most instances, the emotion experienced as part of the seizure is a disturbing one variously described as dread or a feeling of impending doom; in others, the emotion may be experienced as pleasant or euphoric…Descriptions such as “a wave,” “something flowing upward” are often employed.

Controversy continues as to the validity of a so-called temporal lobe personality… Outbursts of irritability, rather than frank violence, are hallmarks of TLE.

[R]are presentations include anorexia nervosa (Signer and Benson 1990), multiple personality (Schenk and Bear.

Most common is a global hyposexuality (deficit of desire and feeling]…

TLE also may be responsible for chronic rather than just acute psychoses. While any of the symptoms of schizophrenia may be encountered, paranoid traits are the most common. TLE patients can be distinguished from schizophrenic patients by the maintenance, when not acutely ill, of warm affect and good rapport…

The treatment of TLE is complicated by the fact that many times improved seizure control via anticonvulsants leads to deterioration of the neuropsychiatric status. Schizophrenia-like epileptic psychoses often emerge when anticonvulsants are normalizing or improving the seizure activity…

While the illness is an epileptic one and treated by neurologists, many neurologists remain unfamiliar with and even uninterested in its neuropsychiatric components. But by ignoring the experiential symptoms, the neurologist deprives the patient of the opportunity to coherently integrate all aspects of the epilepsy. It may also cement the patient’s misconception that in addition to the epilepsy, he or she suffers from a “mental illness.”

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I was going to go into a deeper discussion of this, but cannot at this hour (11:15pm as I must go to bed now. But I plan if I can to do so tomorrow. And if not then, well, then ASAP. Meanwhile, I would have told my schizophrenia.com readers to think back on all that I’d written over the years, and tell ME what is going on…but you cannot do that, not knowing me as well as all that. Needless to say, however, I do think there is reason to suspect that the second diagnosis might have some possible validity, though it is hard to see how all of my symptoms can have been only TLE…But wow, would I be relieved to have a name for it if they were!

TTFN

There is an interesting discussion about schizophrenia and TLE etc here: Schizophrenia and spiritual experiences: Is there a link? http://livewithwonder.wordpress.com/2011/10/19/schizophrenia-and-spiritual-experiences-is-there-a-link/

Prisons, Paranoia, and Plans

Them’s the three subjects I would like to discuss tonight, if I have time to get to them all before I needs must get to bed.

 

I have been reading about prisons recently, a subject that has always interested me, but about which I have not been able to read much due to my general lack of attention span and an inability to stay awake enough to get through any printed material longer than a poem. Those two still affect me, but due to a change of narcolepsy medication forced on me by my Medicare Part D insurance company, the stronger drug I take now does keep me awake (who knew?) and so I can read more — and when I fall asleep reading, I read again after I wake. In such manner I was able to rather quickly read the 2004 book, GATES OF INJUSTICE: The Crisis in America’s Prisons by Alan Elsner and am halfway through another book, even more recent, written by a prisoner. Then there are the manuscripts I have by my pen-friend, 44 year old prisoner serving ” life without hope of parole”  since age 18. In them, both fiction, non-fiction and dramas, he gives a completely raw and naked picture of life behind bars in one of the nations toughest and more decrepit prisons, Walla Walla, in Washington State. The prisoner, I will call him Lance, is perhaps the best writer and best source of all three — certainly his auto-didactics over the past twenty some years has worked wonders, as he is now articulate and highly skilled. In terms of material, Lance of course has what I need and tells a better story than the other prisoner, despite his published- by -a -St Martin’s imprint book.  

 

That said, what have I learned? Well, in brief, that Abu Ghraib and the behaviors we know about there and claim to deplore, barely scratch the surface of what goes on routinely in most prisons in this country, in my state as well as yours. And if not in every state, then those states ship their overflow to others, where they are then treated the same as residents…But my state has, among other things, a reputation for using restraints and seclusion in prisons as in hospitals much too freely; naturally prisoners (and to a degree, though less so, patients) have suffered grievously as a consequence.

 

Lance writes about the details of routine strip searches and the deliberate humiliation to which all prisoners are subjected as a form of dominance assertion by the guards. He writes about the deadly abuse of power in violent cell extractions and beatings and use of SMU  (“the hole”) in which some remain for years and from which some never emerge. He tells us about his life as a juvenile, sent to foster care and from one abusive “home” to another abusive “home,” where it seemed the only reason for taking him in, as well as others, was the money paid for each child by the state, money not actually used for the children’s welfare, but for the home owners’  welfare only. The foster children were routinely starved, beaten and forced to work at slave labor jobs instead of going to school, or to work after and before school if they did. Worse, if he ran away from foster care, Lance was sent to juvenile hall, and then to Reform school for being intractable…In other words, as a ward of the state, he gained a criminal record simply by virtue of the fact that his parents died.

 

But as a ward of the state, he knew nothing else but foster care, and then juvy and reform school, so what else was he to look forward to but…Prison was not unexpected and when it came, it was a shock but not a big one. It wasn’t all that different, after all, from juvy. Now that he’s been there, in Maximum security, and now I believe, medium security, for 20+ years, he has a slight hope of reprieve hope that his lawyer might be able to get him if not out then a new trial. He did not commit the act that earned him the sentence. He was simply “there” at the same time, and considered a conspirator by association. In any event, I believe that people can change, and I think he is not the same kid that went to prison. I hope he is freed one day and that he has someone waiting for him who has the patience to teach him the ropes about society and how to survive, because god knows he will need it. And a place to live and a job and  and and…So much is stacked against prisoners when they become ex-cons. They can’t get welfare or subsidized housing, or work in some fields, good paying fields, and most employers won’t hire them any way, and they cannot get food stamps…so what do they do? Many do not have drivers’ licenses, and would Lance even know how to drive? How would they obtain a legal id? And for what purpose if they can’t get a job etc. But surely they would have something, getting out of prison, to show to police checking on them etc. Can they collect SS if they do end up working for some time? Are they eligible for that? It just seems so impossible with all cards stacked against success that recidivism seems sometimes the ONLY recourse, and return to prison almost appealing after a certain point.

 

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I saw the lawyer, Sharon today to give her a poetry lesson, one in payment for the legal advice she gave me so freely. I’ve been worried lately that she was angry with me, and not letting the secretary answer the phone, and only answering it when I called with my cell phone, because that one doesn’t have my name attached to the phone number. In fact, I was certain that I would appear there today at 11am and she would not be there, that I would have been stood up, so to speak. Deliberately so, because she wanted to teach me a lesson, my having missed my appointment last time, due to my hospitalization. I was really afraid of this and afraid even to open her office door this morning, lest I read anger in her eyes, or a plot therein.s

 

But no, in fact she was happy to see me, and when she saw that I had prepared a lesson on the Haiku, she was thrilled. She said he had always wondered what Haiku was and how it was constructed. Not only that but I had planned some writing exercises . This too pleased her no end. So when we finished, she said, That was terrific, I had such a good time! Which made MY day too, I can tell you. She thought I “read people well” and said so, thought I had somehow intuited her interest in Haiku. That was when I had to tell her what I had really anticipated when I came in today. This surprised her greatly, but she needed to hear it, so she would know how wrong her impressions of me could be. I left, but not before she asked me to come back in June when she would have more time and we’d do more poetry. She was really psyched, which boosted my mood all day.

 

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My plans are all coming together for my upcoming trip to Washington DC. If anyone out there is planning to be in that city on Friday the 17th of April, I will be doing a poetry reading at the POTTER’S HOUSE, a restaurant and bookstore at around 9pm (the “show” a fund raiser for My Mother’s House (donation $15) starts at 7pm)  But I will upload the poster next entry. Other than that, I have to pack, and make sure I have my ID and disability letter and SS card for the train, and and and,.. I have made myself a list over the last three days, adding to it as I think of things I need to bring. I hope that way I won’t forget anything essential…I will not have any books to sell, alas, as WE MAD is still held up at the printers. But no matter. I will have some business cards and postcards and that I have had printed (free!) and I will give those out gratis just to remind people  the book can be pre-ordered.

 

Enough! It is 11pm and I MUST go to bed. So sleep well all you on the east coast, and you on the other coast, don’t stay up too late! Everyone else, I know you are too sensible not to try to sleep the proper amount, if you can…Remember, if people get less than 7 hours, they tend to gain weight. (A true statistic!) In any event, sweet dreams to you all.

New Psychiatrist

Well, I said I would get back here and tell you about my first session with the new psychiatrist, but life got away with me and I haven’t had a chance to until now.

The first thing I noticed, walking into the waiting room, which was both good and a little off-putting, was that the radio was playing WNPR, national public radio. Now the good part of this is that it was indeed NPR, the news and liberal-leaning talk radio that I myself listen to. This boded well, I thought. But the fact that it was talk radio at all, rather than soft music I found by itself rather strange. I mean, what if someone didn’t like or agree with those points of view? It seemed a rather unfair thing to be throwing politics and other controversial subjects into the air right before someone was to see a psychiatrist. Now, right here I am tempted to play shrink to the shrink, and analyze why he might have done this, but in point of fact I have no idea and should not presume to know or even guess. After all I only met the man once.

So I noted this, and felt, well, those two ways about it, then filled out the forms waiting for me, and sat back to wait. It wasn’t long. He was only about 5 minutes late, if that. Then he ushered me into his office, which I noted at once was set out in a big square of large immovable chairs and a sofa. He told me to sit wherever I wanted. Uh, oh, I thought. How can I choose a chair? I had no idea, so I sat immediately in the one touching my leg, which happened to be the one farthest from his desk. He sat down in the chair directly opposite me, about ten feet away, or so it seemed. Maybe it was six feet? Hard to say now, but it felt very far away. I think I will try a different chair every time, maybe until I find one that feels right, or a different one according to my mood, I dunno. All I know is that that one felt wrong for me that day…

I didn’t notice much more about the office after that, not even the colors. I didn’t look around, not with my eyes. I mean, I did seem to look around, in that my head may have turned a couple of times, swinging from side to side, but my eyes didn’t actually take in anything. I was just “gazing into the distance” because I find it hard to make eye contact.

I was going to say, He asked a lot of the usual questions, but did he? Honestly I cannot say now what he did ask. Except that he started out by saying, What brings you here? Pretty standard question, but for the fact that I knew Dr O had spoken with him and that I thought he knew why I was there…So I just said, I needed to find someone to “take her place.” I didn’t mean in any sense but the literal: I needed another psychiatrist. No one could take her place in any other sense. At one point he mentioned that he knew about my book, or perhaps said that he did in response to my asking him if he knew about it. I asked him not to read it, yet, and he agreed, though now I am not sure why. Why not have him read it? It would get a lot of things out of the way. And maybe he would not have read it anyway, was just curious as to why I did not want him to read it myself.

At some point, I cannot recall how, we got onto the subject of my olfactory hallucinations, either gone now or controlled well by lamictal (it is hard to say, as I still reguarly get “whiffs” of burning smells that are unexplained). When I explained the genesis of these hallucinations — a week after ending ECT, starting first as soapy smells and then progressing to burning rubber, to the point where I could not eat anything but tomoatoes and apples, and under what conditions they abated, ie with my taking tegretol (I believe), he said it was absolutely classic for temporal lobe epilepsy.

But, I said, I’d had an EEG at the time, and they said they’d found no signs of seizure activity.

TLE is often missed on regular EEG, he said. Then he told me the kind that usually picks it up, but I failed to follow him…it got too complicated and I was still stuck on the TLE thing. No one had actually said to me Temporal Lobe Epilepsy before. Oh, people had said “seizure activity” many times, in many different circumstances. Like when I took Clozaril and Seroquel. Always, my side effects were Dx’d as “seizure activity” — and then ignored. Ignored! The doctors would simply have me continue to take the drug and ignore what they themselves called “seizure activity”. Is it any wonder that nightly episodes of terrible feelings of impending doom, and what I described every week I saw my therapist as the feeling of my brain building to a terrible electrical threshold that only sleep staved off — or did it? I wonder… Is it any wonder that I wanted to quit both drugs and did so as soon as I could?

But more than that, I’d had a seizure when my wisdom teeth were taken out. I was about 23 and I lways thought it was because of too much novocaine, though that was only my impression. Anyhow, in the middle of the procedure, one arm and one leg started moving up and down mechanically while I sat in the dentist’s chair. I remember the dentist saying, “She’s seizing” then “__ mg of Seconal,” and that is all I recall until they resumed the procedure, which I believe they did do, unless they were all finished…I cannot remember now. In any event, I did go to a recovery room to sleep afterwards, but I do not remember my parents, with whom I was still living, being told anything, or reacting in any way when I told them. Which I find strange to this day, seing as my father is a doctor and I had just graduated from college and was home to study pre-med courses myself.

Anyhow, I have been reading up on this and have even read a little about some mental illness being related to TLE, esp bipolar and even schizophrenia. Went looking for material on the internet, but have not found a great deal on these subjects, at least not that is available to me. It may be that there are specialized journals that would deal with them at greater depth etc but usually the cost of a subscription is prohibitive, as are most texts (over $100). The public library is useless in this regard as well, having so far as I could see, almost nothing on the subject except a few books written for parents and/or children. Finally, I found a couple on Amazon, and sent for used copies. We’ll see if I get any answers.

But I was talking about the new psychiatrist, Dr C. He is tall, his hair seems gray but could be white blonde, and I cannot for the life of me tell how old he is. Not too young at any rate, I do not think. He seems okay, will probably grow on me, so to speak. I had no immediate reason not to like him and I did like his telling me about his opinion of TLE so openly, even if we really have no proof in terms of an EEG.

I will see him again at the end of April, and then we will see. It will be the first time I have seen a male psychiatrist in a very long while, and I don’t know how that will be. but what the hey, I’m willing to try.

Changing Therapists and Current Concerns

When I was in the hospital this past February, I made the tentative decision to leave Dr O, despite having seen her and indeed depended upon her for nine years. At the time, I was feeling, I dunno, burned? Not in the sense of angry but in the sense of, uh, oh, I’d better cut out while I am not too hated, because soon she really will be sick of me and won’t remember anything about me but how much she hated me…Where did that come from? Well, you might laugh, but I did not. It came from having called her on her cell phone, as she has encouraged me to do, on a working day, and reached her instead of her answering machine. I had wanted to know if she had informed the book publisher about my hospitalization. I was taken aback by the sharpness and peremptory note in her voice as she answered. It did not sound like her .

“I, uh, it’s me, Pam, I was calling to –”

“Yes, Pam, what do you want?”

“It sounds like you are sick. I’ll call back later. I was expecting your answering machine anyway.”

“Tell me now. I don’t want to have to answer my machine or call back later.”

“But it is clear you are in a bad mood. I don’t want to talk to you now…”

“I’m not in a bad mood, I’m ill and you are calling me at home.”

“How was I to know that. It is a work day and this is your cell phone, you shouldn’t have picked up if you are sick. You are allowed to be sick you know…”

“Why did you call?”

So I told her, then when she said she would call the Press, I hung up. But I felt terrible, because it was clear that she was angry and it felt personal, felt as though she was angry at me. But I didn’t know why, could only imagine, and so I did, I came up with 100 reasons why she might be angry with me, hate me, want to get rid of me or leave me…This is important, that reasoning, because is lies directly beneath my first impulse to leave her, though it is not and was not in the end my primary motivation. Because I feared she wanted to leave me, I determined to leave her first. It was an old old story, and not a healthy one at all.

But as I said, in the final analysis, it was not really the reason I wanted to find another doctor. No, that was for two other more reasonable, um, reasons: one was that I did not want to have to traverse the state to see her any longer. It took me all the morning and part of the afternoon to do so, which ended up exhausting me for the rest of the day. That, plus the fact that I did not even drive myself, so it cost me extra to pay Josephine to drive me there and back. But more than that was the fact that the doc at the hospital was so – what? not into power, not into authority, or at least played it that way. He would ASK me what drugs worked for me and at what dose. And then proceed to prescribe precisely those drugs, not just ask me and then ignore what I said. Dr O never asked me what drug I wanted or what drug worked for me, simply decreed what I would take and then asked me to take them. She only listened to me when i refused to take them, perforce.

Now, this is not to make Dr O seem like any sort of dictator, because in fact I was very resistant and noncompliant, and often refused any med at all that seemed to help, so I could be infuriating. Also I was in and out of the hospital when not taking her meds. It was only she who had the patience to work with me for 6 years to finally find a combo that worked for me without any undesirable side effects (except a little sleepiness) so that I’ll take it willingly. Nevertheless, I think she is so used to my being ill that she cannot actually treat me like an equal, and someone who might be getting better..For instance, I really need to be able to call my shrink by his or her first name, esp if they call me Pam, which i would insist upon (because I cannot feel comfortable sharing personal information with someone who still calls me Miss Wagner!). It is patently ridiculous at my age that I should call someone twenty years younger than me by a title when they do not use one for me…But I would rather be Miss W than Pam if he or she is going to be Dr so and so at age 35-45!

Anyhow, where was I? Reasons why I was leaving Dr O. Yes, well, be that as it may, I had a feeling as well that she herself was not going to be staying. Don’t know why, but I just had this strange niggling feeling that somehow it was time, or would be. Then I mentioned, in my first appointment post-hospital that I might need to have some help finding a local therapist. She did not seem surprised or if she did, did not object at all, mentioned in fact that she was leaving her sleep practice in June, which precluded my continuing on as her sleep patient in any event. That gave me the first indication. Then when I returned two weeks later, which was last week, I said to myself, I know she is ending her practice of psychiatry as well, because she is moving, moving away, moving, well, inland…I knew this with absolute conviction, not delusionally. I knew I could be wrong, and I was hoping I was. But somewhere deep down I suspected I was not.

I was so exactly on the money it was uncanny. She was moving, was ending her practice. I asked her if she was moving inland. She made light of it, said she wasn’t going closer to the coast if that’s what I meant, but that wasn’t the point of moving. I said I doubted that…And she said nothing. But it scared me, as it always does, because I still feel that I will drown when Antarctica and Greenland melt, as they will MUCH sooner than any scientist now predicts…

I will not continue on that path at this time, however. I was speaking of changing therapists. So now I have made an appointment to see someone new, and only 10 mintues away from me, close enough that I can actually drive there myself. Very close, in fact, to the Vision Therapist I used to see. I do not know how to interview a prospective psychiatrist, or to doctor shop. All the other switches have simply been handed me, and they stuck, or I stuck with them as they seemed reasonably good, and i liked them. But this time, I have no one to hand me someone with their imprimatur and am on my own. I don’t know how to do this. Will I know who is good, who I can trust? I am very bad at that, trusting all the wrong people. Well, this person at least comes recommended by someone Dr O knows well, or at least knows. That ought to count for something. But it is a he, and I have not seen a male shrink in many years, nor had a good experience yet. Dunno how that will go.

But things change and so do people. The doc in the hospital was male, both of them were, and I liked them both. So maybe this time I could tolerate it. Dunno, but we’ll see. If I can, I will write again on April 1, which is when I have the consultation. Will let you know how it went, if it turns out to have been productive in any fashion.

Note: All the information that I have been reading points to two things that I find very disturbing: one is that Inderal (propranolol) which I take for akathisia, a side effect of many psychotropics but for me of Geodon, apparently and quite effectively “blocks traumatic memory.” Now this would be fine, except that it seems to block the formation of emotional memories of ALL bad events, or at least block the bad emotional memories of the events, such that if you recall the event, you cannot actually go back and feel the way you did at the time. Now I imagine that this would be desirable for most people, who usually do not want to suffer from their memories, but I feel deprived of so much of my life, having been on Inderal or a beta blocker (the same class of drugs) for thirty years. I never knew why i could not quite feel the memories I wrote about the way others seemed to be able to feel their memories…I can see them, but I am outside of them, looking on. I feel nothing. I literally look in and see myeslf from the outside, that is how detached I am from the person I used to be, all because, as i believe, I have no emotional recall of the event. Which is why I want to stop taking the inderal…If my blood pressure rises (it is also effective for that) then I will deal with it another way, but I need to see if not taking the Inderal brings back something vital to my memory.

Number two is much more problematic, because it involves the very medications that keep most of usw with this ilness sane and this side of an institution: most antipsychotics and even the SSRI antidepressants block dopamine to a greater or lesser degree. Now no one knows where or even if people with schizophrenia are actually suffering from an excess in dopamine. That is the theory and it may be that dopamine is involved in some fashion but it is not the whole story, The newest drugs are now working on glutamate, another neurotransmitter entirely. Either neurottransmitter may not affect the entire brain the same way. What is certain is that the drugs tamp the dopamine levels down. Supposedly this is only down to a “normal” level, but who knows what a normal level of dopamine is? We know that dopamine is the pleasure molecule, that without enough of it people become thrill seekers, needing highly exciting situations in order to experience pleasure. But what does it mean that many SSRIs cause sexual dysfunction and/or loss of interest in sex? It implies that with suppression of dopamine (and cure of depression?) the dopamine falls below “normal” producing this lowering of normal pleasure and pleasure-seeking.

It is well known that many fewer people with schizophrenia marry, have children or even fall in love…I myself feel detached and cool, feel no particular sexual urge or even the desire to meet a significant other, let alone pursue someone with marriage in mind. Now I’m wondering if this was not me, not really, so much as the anti-dopamine drugs I’ve been taking most of my life…What a tragedy if the reason I feel no love for anyone is the lack of dopamine the drugs forced on me! What a pity if the coldness I feel towards all of my life and all people in truth, is due more to my drugs, the inderal as well as the anti-dopamines than to any deficient genetic make-up . It’s like the wind farms and the sonar of nuclear submarines etc. We build them as if they are reasonably green, having zero effect on the enironment. only to find out years later that the effect was devastating. (I suspect that the wind currents and subsonic vibrations given off by mega-windfarms might be discombobulating our honeybees and even undermining the vitality of our bats (both dying off alarmingly in 2009). What I mean is, we have developed all these so-called miracle drugs for schizophrenia and depression etc but do we really know what they do to the person, quite apart from the alleged antipsychotic effects? What about other costs to the individual? What are they and has anyone thought to look for them? Does anyone have a choice in the matter? Is it fair? (Obviously no, it is not fair, but then life isn’t fair, so that is a silly question…) Should they have a say, a choice?

These are notions that currently concern me. I wonder if anyone else has been pondering them…If the honeybees and bats and dying whales and dolphins deserve our attention, as most surely surely they do, the highest priority, I would hope that somewhere down the pecking order we with schizophrenia might deserve someone taking a good hard look at just what the suppression of dopamine might be doing to us in the larger picture as well as the smalller one. Just as schizophrenia, I am convinced , does NOT condemn one to obestiy, but the drugs do, just so I believe that the drugs do a number on us the full nature of which we have no inkling of.

Note: this is NOT to encourage anyone to stop taking their medication. Obviously I still take mine, fearing psychosis and the return of the voices far more than I want some dopamine at this point. But I ‘d like some input in the matter, too, and wish they’d develop some better drug or treatment protocol than the present one. Surely I can still be human even with schizophrenia. What with Inderal and the antipsychotics etc I feel more like an automaton, or Mr Spock or Data.

Artwork – Mu’umu’u Mama

Mu'umu'u Mama
Mu'umu'u Mama

This is the one slide that didn’t make it into the mini artshow, even though I had meant it to. So here she is, about twelve inches tall or so, and of mixed ethnicity, given her lovely dark skin and incongruous Roman nose! But mixed heritages are in these days so I guess I can be forgiven, being her creator…

Three Schizophrenia Blogs plus…

Judy Chamberlin was hospitalized for depression in 1966 and then against her will in a state hospital, which she found horrific. That experience spurred her life work as an advocate for psychiatric patients and better treatment, gentler, more dignified treatment in fact. But I should not tell her story, because I only today found her blog, thanks to Bill W. No, you can read it in part at the Boston Globe here

http://www.boston.com/bostonglobe/ideas/articles/2009/03/22/a_talk_with_judi_chamberlain/

and then follow it in more detail at her blog here:

 

http://judi-lifeasahospicepatient.blogspot.com/#mce_temp_url#

 

A WONDERFUL blog is Yin and Yang, Kate K’s blog at http://wanderer62.blogspot.com  

 

Kate writes of her journey from schizophrenia down the road to become the person she is inside, the person she wants to be. This entails describing in her wonderful, meditative prose her efforts to regain her singing and songwriting, her ongoing painting enterprise and her struggles with weight and fitness, voices, and isolation. Along the way, there are forays into spirituality — both buddhist and otherwise, all laced together with Kate’s careful and exquisitely thoughtful reasoning. 

 

As for Christina Bruni’s website with articles, memoir and blog, let her speak for herself, because she says it best: “My goal is to be the Rachael Ray of the recovery movement. Have you ever seen this chatty, gregarious cooking expert and lifestyle show host? One day I watched her on TV while I waited in the doctor’s office. Her infectious good humor cheered me so much that I wanted to tape her shows and replay them at night when I got home from work.

It was then that I decided that I want everyone who meets me—whether in person or on paper—to feel good afterwards. I’m open and honest about what happened to me because I believe that people can recover. “Only silence is shame,” to quote the Italian anarchist, Bartolomeo Vanzetti. And if I kept quiet, what would be the point?

I seek to be a force of good in the world, because the illness destroys, and through my recovery I want to create things of beauty and show people a better way.  Quite simply, I couldn’t bear to see someone go through what I did and feel there is no hope, or worse, not get the treatment that works.  If I remained silent, I’d be complicit in perpetuating the stigma.”

 

http://www.christinabruni.com/index.html

 

 

Overcoming Schizophrenia, which is Ashley’s site, is also tremendous. She is in her 20s, an accomplished writer, and though younger than the rest of us, that is an advantage. She can talk about what it is like to recover from a first episode and the hope that recent diagnosis and rapid treatment now offers.

 

http://overcomingschizophrenia.blogspot.com 

 

 

 

ArtShow (mini)


14 pictures
View Album at Shutterfly

You can see most of what I am exhibiting this weekend at the above site. I have displayed most of it here before, though perhaps not all of it. In any event, it might be nice to see most of it collected in one space. I hope it is not all distorted as this “cover picture” is…

At the moment, I have the Trudy child, Dr Jumoke and Decorated Betsy all sitting in my one room staring at me, not to mention the tortoise standing on its shellside glaring and looking most uncomfortable. The Muu’muu Mama is the only one who seems cheerful, enjoying her new youth with her black hair and big smile.

Ah, this is silly I suppose, but it is gettting crowded in here. Still I enjoy it, all these humans staying the night for the week!

New Papier Mache Artwork

I have been madly completing artwork for the show coming up on the 28th. So far have done three bowls and finished the Sitting Child Trudy…Have two more bowls waiting to be painted…And a goose to make for Ruth. Meanwhile, “The Book” is not yet printed, but it looks like it will be soon…The one poem I hate, Solo for Two, cannot be deleted, so I must settle for it staying in  but the other corrections were made. I wish I had not been told that the book needed no editing, which is patently silly, ALL books need editing! But that is what they told me, so I did not look at it again, until it was too late to do much. I should have known better! I ought to have known better, as that is precisely what Diane K, our erstwhile editor told us about Divided Minds, and so opted out of helping us. But nothing could have been further from the truth, and luckily we knew it. She was basically trying to sabotage the book, even Lynnie thought so. ARGH, that is water down the sluices…What is important now is that the corrections I really needed made in WE MAD were in fact made, and the one poem I do not like may in fact appeal to someone. So I will put up with that one poem staying in, and hope it does not mar the entire thing…

That said, here are the new art works, first the three bowls, which take about a day to paint each, more or less, and then Trudy, which took several months of intermittent work.

Two Bowls, one 4" and one 7" - papier mache
Two Bowls, one 4" and one 7" - papier mache
Odd Botany bowl -- these plants are not real anything
Odd Botany bowl -- these plants are not real anything
Another shot of Odd Botany bowl
Another shot of Odd Botany bowl
Ditto
Ditto
Final side of the Odd Botany bowl
Final side of the Odd Botany bowl

 

trudyfincopy

Trudy is about three feet tall but on her hassock is somewhat taller. I’d say she is about the size of a seven year old? But I dunno, since I haven’t seen a seven year old in a while. 8)

Schizophrenia and Sleep: Is Psychosis a Waking Nightmare?

I believe that I have written before about having narcolepsy as well as schizophrenia, and while it is up for grabs whether or not this sleep disorder as well might be caused by Lyme Disease, at this point it seems moot in both cases. I still seem to need the psych meds as well as the narcolepsy meds, so what difference does it make if the Borrelia bacterium originally caused the disorders? It seems that I have them now, so I must go on from there…

 

Anyhow, ever since college, at about age 22, I have had a terrible time with daytime sleepiness, no matter how much sleep I got at night. I could never stay awake during the day unless I were walking or physically active. Once I stood still, and god forbid if I sat down, I was immediately subject to an overwhelming urge to sleep and it seems to dream, the latter not always coming after the first.

 

The dreaming before I feel asleep only grew worse as I aged, until in my late thirties and early forties I began to have to ask others whether I dreamed something or if it really happened, because I could not tell the difference. I did have a kind of a touchstone, the very fact that I had to ask the question, seemed to mean that it did not in fact happen, but I never quite trusted that understanding until after I’d gotten the denial. In my late forties, it was happening every day, and in addition I was hallucinating visually, not scary things, but hallucinations like stories that I could discuss with Dr O objectively, but bizarre enough that she was concerned. It wasn’t clear how much of this was REM-sleep intruding into the waking state, a phenomenon of narcolepsy and how much was schizophrenia, especially when the hallucinations spoke to me and told me to harm myself, and I obeyed them.

The reason I relate all the above is that we eventually solved the problem, at least this one, and while I told the tale on my other schizophrenia site I feel it is important to tell it here as well.

 I haven’t wanted to muddy the waters before now or get people’s hopes up for a drug that might help one person in a million. But who’s to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.

 

In 2004, I did something quite desperate. In response to voices telling me to immolate myself, and on an impulse to put an end to their tormenting me, I set fire to my left leg, with the result that I had third degree burns and skin grafting. I had burned most of my forearms before this, but incrementally, and had burned out cigarettes against my face too, but have never done anything quite so dangerous as this. I realized how close I had come, pouring lighter fluid over me, to setting myself on fire, not to mention the building itself. It could not happen again. So the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor’s orders changed.

 

I made up a contract, after I got out of the hospital, and gave it to my visiting nurse, saying that I would not refuse a single dose of medication ever. And in fact, I did not. That certainly stabilized me to the point where I stayed out of the hospital, though I didn’t feel particularly well. Then, I finally agreed to try a drug Dr O had for a year been urging me to take. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory went, the spells of waking dreaming would  happen less often, I would need fewer stimulants, and the sleep attacks would cease…among other things. 

 

Xyrem is not a drug without a difficult past. Once known as the “date rape drug” it has faced bitter controversy. Hearing were held in congress over whether it had any therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be not to ban the drug outright. Thanks to their efforts it is still available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.

 

It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. A liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice or non-acidic kool-ade and taken just before bed. It’s bad tasting — actually on the salty side — so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!

 

When I first started taking it, falling asleep terrified me, because I just tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for weeks, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear than anything else. After about a month, though, I was able to take the drug without trouble, except for the middle of the night awakening, which bedevils me to this day…

 

I found a website, MyCalls.com where you can set up a schedule of recorded messages that they will play at a certain time at night when they automatically call you to wake you, but I find that I barely hear the phone after a certain number of calls, and when I do, I simply pick it up, press one, to cancel the call, and hang up, then fall asleep again. Even if I don’t manage to do that much, I know the phone will quit ringing eventually, and that the calls will cease after three repeats. I’m lucky if I manage even to hear them at all; if I’m in a really deep Xyrem-doze at the time I’ll simply sleep right through.

 

The effects of taking Xyrem can be felt within two weeks if you’re lucky, though it takes months for some, and for me it was a miraclous 12 days. My improvements however, had nothing whatsoever to do with narcolepsy, which was the strangest thing. Improvement in that sphere did take months to appear. What improved were the last symptoms of schizophrenia.

 

The last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she, and certain other people, looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that  the voices were only false perceptions inside my head.

 

Since we hadn’t started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don’t have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her,  it has worked for no one else and she does not recommend it. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who’s to say what it would do in others with schizophrenia…

 

Now it is 2009, a couple of years after I wrote most of the above. I would like to add  the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day.  That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could…My apartment seems to “fall apart” and it is hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can’t get back before I get exhausted).

 

 

Exhaustion is my biggest fear…that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare…And the outcome has sometimes been negative to the max.  I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I’m always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital…

 

Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn’t know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, “Oh. My. God.” Then she rcovered a bit, “You look wonderful, Pammy, normal.” She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up, (never again!) as if I actually cared how I looked. She couldn’t believe it. She said my walk was almost normal, that I was less awkward in my body. She felt like she had her twin back.

Two Poems: The Middle of Nowhere

Although this poem, under  a slightly shortened title, will be in my soon to be released book, WE MAD CLIMB SHAKY LADDERS, I showed the rewritten version to my writers group tonight . It is basically a true story, about the friend whose recitation of a Gerard Manley Hopkins poem instantaneously converted me from a poetry skeptic to a poetry lover…but read on and you will see what happened.

 

The second poem was sparked by my recent hospital stay but not based on it, rather it is based on the misinformation purveyed by movies such as the ones mentioned in the beginning of the poem, and also in the books from which the movies were made.


YOU WERE A POET ONCE (NOW YOU ARE

LOST IN THE MIDDLE OF NOWHERE…)

 

You were a poet once. You touched my soul

with the gift of poems, teaching me to read and write–

oh, inevitably to write them, for writing made me whole

and I could never not write. I had no special goal,

only to “pour out a poem” and work it right.

 

That took me years. I was such a fool —

dreamy cups of poems, quote unquote, only wasted good ink…

But I was speaking of you. You gave me the tools

to teach myself; you should have returned to school.

You found vodka: you could not, after one drink,

 

stop. And though it seemed deliberate, a choice,

I suppose you couldn’t help it. On conversion day

you recited Hopkins’ “Spring and Fall,” your voice

for once not blurred by Popov. (Still, I didn’t dare rejoice.).

You were so sure, so caught up in what you had to say.

 

It changed me utterly. Few experiences work such magic.

Why you quit poetry for drink I’ll never understand.

Life made you querulously unhappy, so there’s a logic

in your refusal to live. But I’ll never not think it tragic

how your gift to me soured in your own hands.

 

 

 

REALITY CHECK

 

First, you have an address, a 9-digit zip code

and two free patient telephones, so you’re not lost

in the middle of nowhere, this is not the movies.

Not Cuckoo’s Nest at any rate, nor the I-Never-

Promised-You-a-Rose-Garden rose garden.

And that Girl, Interrupted? No, it is definitely not

her giant sleepover with hair rollers, gossip

and steaming hot chocolate. For one thing,

hospital tap water isn’t hot enough for cocoa

and unless your roommate, the anorexic

with fruity breath and ironed tee shirts

becomes your best pal, that’s it for the party,

no one else gets in your room. Even in a single,

the checker disturbs you every 15 minutes.

Now, I know that keys play a big role in film:

someone always swipes a set for the night

to go AWOL or wreak havoc. In reality,

“insurance cured,” most want to stay longer

than leave shorter. Going AWOL is more

the impulsive leap through briefly opened doors

than planned absconding at midnight

with a stolen keycard everyone is watching for.

Too bad paranoids still suffer, unable to trust

the good of best intentions. As for having

enough free time for the ward sociopath

to “wrap the catatonics in toilet tissue,”

there are too many groups and too many aides

with a job to do and you are it, so get moving.

Besides, catatonics are not allowed to stay

catatonic, what with medication and better care, 

so very quickly slowly they move too.

 

Vision Therapy: Update

On Tuesday, the day after the big snowstorm in this New England state, I managed to make my appointment with Dr D,  vision therapist-optometrist. I had thought that the problem, which was that I was having trouble reading due to the letters becoming jumbled and dancing around the page again, was my “constant or near constant exotropia” come back to haunt me. After three weeks spent largely in one small room in the hospital, a good part of that time using either glasses without prisms or at one point no glasses at all (because the lens had fallen out and I had no screwdriver to fix them with) I thought I’d “lost it” i.e. everything I’d spent so much time learning in VT.


Dr D did an exhaustive exam, or so it seemed to me sitting in the chair, my eyes getting wearier and wearier (!). However, when she was through, I was surprised to find out that the exotropia was actually quite a bit better, that in terms of my depth perception, I needed nothing more than to restart the exercises and perhaps spend some time looking  at  anaglyph pictures with red/blue glasses again — to reestablish the habit of seeing 3-D. According to Dr D I had all the ability to perceive it that I had had when I left her.

 

So what was the problem? Well, so far as she could determine, my right eye seemed to have become more myopic than before, enough so that I needed a new prescription. She seemed to feel that it was because of this that my vision felt jumbled, especially after reading a little while. Indeed, when she gave me the card to test my near vision, I could see every line quite well, as I usually could, since I have excellent near vision. But I knew that within minutes of reading a page of text, either in a book or more especially on the computer, I would begin to have difficulty (as I am even now as I write this). She felt that the increased medication was likely the culprit, and that if it was to be kept at this level, I should probably have my glasses changed to accommodate to it.


So all’s well that ends well. I left feeling a good deal cheerier than when I went in, knowing that I did not need to begin all over again, but only to do a tune up by myself, and get a new prescription if my meds are not going to be changed any time soon. (I may wait and see about that, since I do want to reduce the Abilify to a “humane” level, rather than keep it so high for good…I did well on 20mg for 18 months; I don’t see why I would need to stay on 35mg permanently just because of one relapse…Surely the increase need only be temporary…)


Tonight, I started “showing my brain” it could perceive the 3-D images that my eyes already see. I looked for my white, marked pencil for pencil push-ups, but couldn’t locate it, nor could I find the Brock string, though I had carefully stored both somewhere. (Lord help me, I am always doing that: packaging important items carefully with labels etc, putting them away for safekeeping, then promptly and completely forgetting where the hell I put them!) So instead, I put on my red-blue glasses and went to the internet site where I knew there were useful anaglyph pictures to get me started. If you happen to have red-blue or red-green glasses, perhaps from a three-D movie or graphic, you might like to check out this particular site, where the shots of Barcelona, and especially Gaudi’s work, are spectacular: http://www.3djournal.com/001/gal_Barcelona_3D.php

 

I was pleased to find that after some initial difficulty, I was soon able to resolve many of the photos into layers of depth, even a couple of pictures that before now I had not been able to see as three dimensional. What is more, upon taking off the glasses and looking around me, the world  changed: suddenly, amazingly, the magic was back…Space was present again, holding things in its embrace, embodying even the flat surfaces of things, so that they now implied the substance that lay behind.

 

What do I mean by that statement, that space embodies flat surfaces so that they imply the substance that lies behind? Well, there is a book behind a flat book cover, no? Without the ability to see 3-D, one would not be able to know, without being told, that something was a book, and not merely a picture. The “bookness” of the book, the substance, the three dimensionality can be seen because of what space allows us to see, the continuity of a surface beyond the visible front. When I had not the same 3-D power of vision that I have now, I did not in fact see this continuity, so that unless I “knew” that a surface was a book, and therefore had the substance of a book behind it, I could only perceive the flat picture/cover presented me. It looked no different to me whether a picture, flat against the shelves, or a book, cover facing outward, and I would not know which it was, if I were not told. Of course, there can be monocular clues, clues like shadows and shading, clues like the oval on the top of, say, a glass or the curvature on the top of a book’s spine, versus the flat line of a picture. All give hints, but barring those freebies, space and depth perception are what tell most people that an object has substance, are what implies continuity beyond what is visible. Without the ability to know objects continue in space beyond what is strictly visible, you do not see the same object that the person with depth perception sees, much as you might believe you do. You can only know what you are supposed to see, say, the book, and then see it. But you do not first see the book, and then know it.

 

For a better example, take that palm plant I used to use as a touchstone for whether or not I could see properly. I knew it was a palm plant, yes, because it had long and multitudinous leaves, a mass of them. Now maybe I would have noticed this anyway, being an amateur botanist all my life, but what I did not do because I did not see them, was try to count the leaves, or find out where they were attached…Was there one stem or several, was it bush-like there, or similar to a tree? Looking never occurred to me, because it was just a jumble of green. I needed to be told what was there, in order to see or even notice it. Without that information, it escaped my vision; I failed to see, I failed to so much as think about it.

 

But that was before, now it is different. Now, and tonight in particular, the magic was back and sudden 3-D-ness made everything suddenly pop. Once again, I am filled with thanks for my original loss of depth perception, simply because in the regaining of it, I experienced, I believe, a sense of beauty that may be unique to those who, like me, have had to learn or relearn depth perception in later life. It is not something I regret in the slightest. If I missed it for some large part of 56 years, it doesn’t matter at all, because I have gained so much  — well, I have no other word for it — magic now that it makes up for every minute when I didn’t have it or know what I lacked. After all, the past is gone, the present is all we have for certain, and the magic is here and now. I’m more grateful for it than I can say.

Schizophrenia: “Divided Minds” and Recovery

The day our book, “DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia” came out, in mid-August 2005, Carolyn/Lynnie, my twin sister, and I had three engagements scheduled, including a radio interview, a TV appearance, and, that evening, our first public  speaking/reading engagement at a local library. Due to advance publicity and widespread interest, it turned out that the venue had had to be changed to accommodate all the people who had called ahead indicating they planned to attend: instead the usual small room at the library, we were to speak in the auditorium at the Town Hall.

 

I made it through the day all right, but by evening, I was beginning to become symptomatic, hearing people unseen whispering over my shoulder and seeing familiar dancing red particles I called the “red strychnines.” Nevertheless, I was determined to make it through the final “gig” of the day in one piece. I was, however, getting more and more nervous, despite taking my evening medications early. Finally, Lynnie suggested I take a tiny chip of Ativan, not enough to make me sleepy but enough to calm my anxiety. I resisted up until the last minute, when, finding the stress unbearable, I agreed to it. She ran to get me some water, and came back with two cold bottles that had been set aside for us all along.

 

Then, we were on. Lynnie had done some speaking before, and seemed to me to be amazingly relaxed in front of the 340 people who overflowed from the first floor onto the balcony above. When she introduced me to read a section of a chapter I had rehearsed over and over until I could do so with the proper ease and feeling, I got up, trembling, and walked to the podium, wondering if my voice would tremble also.

 

In the book’s margins I had everything written out, from my introduction to the passage to instructions to myself on where to slow down, where to raise my voice, where to pause and so forth. I raised my head and looked at the audience, then looked down at the text and taking a breath, began.

 

I was surprised to hear my voice sound as strong as it did and wondered how long I could keep it up, knowing how fatigue and awareness of the audience could make it weaken and go tight on me. Indeed, after a particular spot in the book brought painful laughter from some in the audience, I could barely speak. I had coached myself for this eventuality: Breathe, I told myself silently. Breathe through it, keep reading but breathe slowly and calmly as you read and your voice will relax and stay loose. To my intense surprise and relief, it worked. I made it through the entire segment. “Thank you,” I murmured, indicating that I was through,” though it was obvious from the text that the piece had come to its natural end.

 

The audience burst into applause. People stood up, all of the audience stood and clapped. I didn’t know what to do. They were applauding me? What had I done to deserve this? Even Lynnie was on her feet and smiling. She nodded at me, telling me it was okay. Her eyes seemed to sparkle, as if they were full of tears. My own eyes were wet and I was too embarrassed to wipe them…

 

Lynnie then gave a speech of her own, a wonderful speech, ending with her asking me to stand up. and this too received a standing ovation. We looked at one another.. Who’da thunk? our eyes asked in pleased but puzzled amazement. Then it was over. But not quite. There was still a long line of well wishers with books to be signed and many people who wanted to talk to us. I was so tired that I let Lynnie field most questions, and   hid behind her or busied myself signing and pretending to pay attention to her, so I didn’t have to talk myself. In truth, I was exhausted, and though elated the evening had gone so well, on the verge of tears from sheer relief…

 

When we left, there were only a few people remaining in the hall. The library employee who had given us the opportunity to speak, told us it was one of the best attended events he had ever scheduled. We thanked him or Lynnie and Sal, her new boyfriend, did, I mostly lagged behind, and  followed  as if in a trance. Then we headed out into the warmth of the August night.

 

After the success of that night, the book tour, and later our paid (Lynnie was paid, I was not, as she had to take time off from her practice to do so) engagements became easier and easier, especially after we worked up speeches of our own and developed a rhythm and interaction with one another that seemed to work well. But it was wearying, and I wasn’t always taking my medication as I was supposed to. I still hated Zyprexa, which we had cut to 2.5mg plus Haldol and Geodon, and so I skimped on  it as often as I could, as well as the deadening Haldol. Geodon was the only antipsychotic I was on that seemed to have no objectionable side effects, but it clearly was not effective by itself. So even as we made our way out to Tucson, AZ I was skating on the edge.

 

2006, fall. I had made it 18 months since my last hospitalization but fatigue and exhaustion and it may be (I do not now recall for certain) not taking all my medications as prescribed conspired to allow in the same hallucinations that had such devastating consequences back in 2003/4. I was to set my whole body on fire, they told me, not to kill myself but to scar myself so badly that all would shun me, leave me alone, which was what I deserved, and what they ought to do in order to be safe. Because I could not promise not to act on these commands, I was hospitalized not far from where Lynnie lived at the time. I spent a month there, a very difficult and painful disruption in my life about which I have written earlier (see the entry about “trust”).

 

I was hospitalized it seemed every five months after that, until 2008, when I managed another 18 months. But life in between those stays was improving. Although we still did occasional speaking “gigs” we slowed down on those a great deal, so my time was more my own. I had made a papier mache llama once in 2004 when I was hypomanic, and it had taken all year to paint it, after I’d come home from the hospital no longer high. But the fun of it had stuck with me and in 2007 I made a turtle, a huge tortoise and took a couple of months painting it. In between I created some small objects. Then over December 2007 and January 2008 I built and painted my first large human, the Decorated Betsy. I was off and running, with Dr John Jumoke coming in April, May, and June of 2008 and the Shiny Child Ermentrude started in October of 2008 and finished in early January 2009.

 

Also in this period of time — between 2005-2009 — I put together my first manuscript of poems written over a 20 year period about living with schizophrenia, and another manusript of more recent poems, not about schizophrenia, and sent the first one off to the press which is publishing it, in their series on chronic illness. Once it comes out, probably in March, I will be free to finish work on the second. I will send that one out  and hope it too gets published as I prefer those poems to the ones in the first, though I have had rave reviews on that one, at least from the people who have seen it so far. I, of course, as the author, can only view it through the jaundiced lens of self-criticism and self-hatred…

 

Plus ça change, plus la meme chose. (and some things never change…)For all the seeming success I have had in these past three years of recovery, I still struggle with abysmal lack of self-regard, and chronic paranoia. If and when I find myself a new therapist (I must soon leave Dr O, as the travel time 1.5 hours there and 1 hour home  has become too much for me, and too it may be that she will no longer be continuing her practice, though I do not know that for certain…But in this economy, I can no longer afford the ride there as well as her fee. And I think too it is time to move on…both for her sake as for mine.) ..if and when I find a new therapist, it is those two things, self-esteem and the very right to have it, and paranoia — how to either end it, or live with it, are my two major goals I want to deal with, head on.

 

But then, maybe that’s all we have ever done, Dr O and I, dwelt forever on my lack of self-esteem and my paranoia, getting nowhere for all that. Perhaps she had the wrong tactics, the wrong methods, or else perhaps I am hopelessly mired in  my own worthlessness and suspiciousness — for lack of a better word, though paranoia means so much more than that…

 

In any event, I have tried here to describe in one entry a little of what has gone on for me since the book came out, since the beginning of my recovery. But my recovery truly began when I’d started Xyrem some months before. That is the drug that caused Lynnie to exclaim upon seeing me, two months after I’d started it, “Pammy, you’ve changed. You look wonderful, you’re back.” Xyrem, book, papier mache, poetry…all together gave me parts of a life that became somehow worth living, and it is worth living, even if at times of dark forgetting, as in February, I lose track of the one fact I need most to remember.

Schizophrenia: Recovery and the Reality Test

There have been many stages to my recovery since my first hospitalization at age 18 and really since age 31 when I was formally diagnosed with schizophrenia. While there were countless hospital stays, sometimes 6 in a year, or  2 three-month stays practically back to back, I managed to climb back up to a place where I could go back to the world and function well enough to write poetry, all that I asked of life. With better drugs being available and also better treatment of the mentally ill and improving attitudes towards us, I experienced what you might call a breakthrough each decade. It never quite made me whole or happy, but each mini-recovery lifted me a little higher out of the muck of depression, despair and anhedonia (loss of the ability to feel pleasure)– for a time at least. And each breakthrough gave me lasting tools to deal just a bit better with the next onslaught. I can’t say I learned very well or very quickly, and insight gained with great difficulty abandoned me time and again at the very moments I most needed it. But I became able to write about these episodes after the fact and to learn from them later. At the very least, I felt I could teach others from what I was able to put into the written word.

 

One of the hardest to learn but most useful tool in my recovery tool box even to this day is what I call: The Reality Test.  It sounds so very simple, consisting of the need to challenge a delusion or hallucination by asking the people involved a question pertaining to the matter, such as, Did you say such and such? Or Did xyz actually happen?or Did you hear what I heard? The key thing is that after you ask the question you must listen to the answer and trust that the person’s answer is the truth. Often I would do everything except for the last part, where I balked, and simply accused allof lying to me unless the other person corroborated my paranoid assumptions.

 

 

Until I learned it, and could do it fully, including the trust the truth part, I had no idea that I was living in something other than consensual reality. Even though people told me again and again that I was paranoid and delusional, I figured they were just using such words against me, to hurt me, insult me because they did not like me, because they had hated me from the minute we met. But once one especially frightening delusion dissolved in the light of reality, it became clear to me how much time I had been spending in a fictional world and how often I needed to use that reality test, which is to say, all the time.

 

 

Lack of insight. That was the fundamental difficulty. I did not know that I had  a problem. The reality test gave me insight, but it often took me a month long hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it.  This is as true for me in 2009 as it was in 1984. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I have only found insight in the accident of using it. Perhaps it is different for each individual. If you or your loved one cannot understand that there is a problem, do not force it, it will not do any good: you cannot see colors if  your eyes have no cones. What you can do is find a way to have them agree to take medication anyway — as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I once decided to force myself to take them and started doing so in the hospital where I had been refusing them. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I did not refuse medication even once.

 

          Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree that where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances sometimes this can be necessary. I understand that some people with schizophrenia will be horrified by this suggestion, but I, have been around, done things that I wish I had not done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off medications — whether Thorazine, Prolixin, Clozaril or, worst and best of all, Zyprexa, I would never stick to any proposed regimen –about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. 

 

Now I am on 17mg of Abilify twice a day plus a full dose of Geodon. Two antipsychotics. Two anti convulsants. An antidepressant. A stimulant for narcolepsy. A beta blocker for side effects, specificially Geodon induced akathisia, and two antibiotics for Lyme disease. But I take them, supervised by a morning and evening visiting nurse and wow, what a transformation. They are not like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.

 

Now, though, now I write like wild fire. I write and write — pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like an electro-chemical river from my brain down through my fingers and pour out into the world!

 

So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It is what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they would but surrender a tiny bit of what? freedom to be crazy? to suffer? and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been taken lightly, to work to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.

 

There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to “get” rather than forget the reality test? 

Vision Therapy and Schizoaffective Disorder

I combined two subjects in my heading –and they are related — in order to “recapture” as many readers who might come back looking for an entry after three weeks of nothing…

 

I’ve been in the hospital. Yes, a relapse of schizoaffective disorder, due, I think, to stress, poor sleep, worse eating and terrible time management,  in tandem with a flare-up of the underlying infection  of Lyme disease (for which I’d had a positive Western Blot test as late as 2006, five years into treatment).

 

I was in fact overwhelmed, sad, depressed, tired and sick of it all. I wanted to write and do my sculpture and it seemed as if everyone wanted many and more pieces of me and my time. Despite all the successes of the past year, I felt hopeless to change things On Effexor, after a long two and a half weeks, my spirits rose and my hopelessness diminished. I was able to unblinder myself, removing the brimmed hat I wore day and night, and enter the world again (in terms of mood, the affective part of the disorder).

 

In terms of the schizophrenia aspects of the disorder,  this hospitalization was brutal. I heard my name, my full name, being called 100 times an hour, on any given day. When people spoke to one another within my view, I could see (and heard it) that every word  spoken between them was my name, and nothing more. The entire ward had nothing better to do than to persecute me by saying, yelling, whispering my name.

 

Then one day something that really scared me, they whispered, “I’m choking myself. I’m choking myself. Pam, start choking yourself. Start choking yourself.” Always, almost always before this time, when faced with such “command hullucinations” I blindly obeyed the directives of the “dictator-voice,” too afraid to do otherwise. This time, rather than obey and do as he or they insisted, I ran out of my room. I looked up and down the hallway for anyone — anyone! — a mental health worker, a nurse, even the ward secretary would do.  No one .

 

What to do? What to do? I raced back to my room, stood  just inside the doorway. No, I could not stay, not with this voice assaulting my brain. I had to find help. Somehow. Then I heard someone coming down the hall, briefly stopping at every room to check on its occupant: the mental health worker “on the floor” which is the say, the one who was assigned to do fifteen minute checks that evening. Stacy, with the long dreads, was  just the person I needed.

 

 

“Stacy,” I whispered urgently when she came nearer. “Stacy, I need to tell you something.”

 

“What is it, Pam?” she smiled.

 

“They’re telling me to start choking myself.”

 

“Who is?”

 

“They are, the people who talk to me, the voices if you need to call them that.”

 

She frowned. “You aren’t going to act on that, are you. Now, come. Let’s find your nurse and see what he can do for you.” Then she took my hand and led me up the hallway to the medication room where Paul was doling out nighttime pills too early for my taste. “Paul, I think tonight, Pam needs her antipsychotics early. What does she have?”

 

He told her what I was taking, and they murmured together a little. I assumed they were discussing what I’d just told Stacy. After I’d taken the pills, Stacy again took me by the hand and walked me down the hallway to my room.

 

“You gonna be all right now?” she asked.

 

I nodded, dubious that the meds would do the trick, but hopeful in any event. I knew now that I could in fact ask for help and be given it, that I did not have to obey the voices not even when they demanded action.

 

But that was only one of many, many incidents. I won’t bother to recount them all, or even just one other, not right now. All I want to say is that the voices never did let up until the final weekend, due to stress caused by a very disruptive patient. It was only the weekend before the day I was discharged, when she’d been booted out, that the ward was tranquil enough for the voices to diminish, and then by Monday begin to cease. Yet even at the very same time, another problem reared its head…

 

This is chronic neuro-Lyme: plots abounding, exaggerated startle, acute dyslexia, increased paranoia and rampaging ideas of reference…I had them and worse in 2000 during the massive psychotic break at Y2K and I had all or most during this hospitalization in a diminished form, when the antibiotics were changed and failed to protect me from a recrudescing infection.

 

Now, why or how does Vision Therapy tie into this? It is related because while in the hospital, that closed-in space with blinds on the windows so the view is largely obscured, I lost my ability to see 3-D, to perceive depth and space. I even lost my ability to read or untangle letters on the page or properly read the words on a computer screen. I noticed this one day when I looked to see if the pen was clearly above the paper, and found that I could not easily say that it was, that I was deducing it from the overlap and the shadows. Occasionally, depth perception would flicker on then off, and it was delightful, but most often I found it was off, and decided to let it be. I knew how to restore it, that it could be restored, and that Dr D would help me if I needed help. So I figured, the worst would be I’d have to re-train my eyes, but the best part of that would be the thrill of re-entering the beauty of the borderline between 2D and 3D.

 

In the follwoing posts I plan to describe the Vision Therapy sessions that help me regain my depth perception, and also in others discuss aspects of schizoaffective disorder, the schizophrenia aspects as well as what I know about depression.

 

Stay tuned…

Prison Abuse: A letter etc.

Edited from a letter to a friend: 


I sent the following message to the White House website — the Office of Public Liaison. It is the beginning of a snail mail campaign (insofar as I am able), geared directly at President Obama asking for a prison and “juvy” reform agenda. So far as I can tell, he has nothing  of the sort at this point and we need one.

 

This is the very least I can do as I have decided that while I write this blog and books on behalf of my own issues around schizophrenia and mental illness, my political writings and action will be on behalf of a prisoner I am acquainted with who is sentenced to “life without hope of parole.” (I ask you is there a more fiendish mode of inducing despair, desolation and desperation in a soul than such a sentence?)



But my question  submitted on the form available was as follows: “Is there any Obama agenda for humanizing juvenile detention centers and for prison reform?  Abu Ghraib, Guantanamo and other foreign-soil prison abuses  did not come out of nowhere. Abuse and yes, torture of prisoners in “juvy” and US prisons are practices both brutal and common that serve no purpose except to create more violent convicts. Most will one day be released – to no one’s benefit, least of all  society’s. NO ONE CARES about them. They have been forgotten, lost, abandoned. PLEASE help.”



 

I was limited to 500 words so this had to be very carefully crafted and I wanted to get in some of the most important points. I dunno now about the comment about Abu Ghraib, but it seemed to me to be the important name to cite — an accurate reference for all that, according to my source– to draw attention then to the equation with US maximum/moderate  security prisons.

 

Anyhow, I don’t expect much of an answer (though the website implies the promise of something along those lines) but it was mostly to introduce the subject, into which I plan to go in greater detail in later letters.  


 


Towards the same ends, I am reading Christian Parenti’s 1999 book on US prisons and the “correctional system” in general, Lockdown America. I have had the book for years but have never been able to read it, though I wanted to. Now, suddenly, due to interest in this prisoner’s plight, I am slowly plowing through it. I admit it is difficult to get myself to sit down and read, but I really want to and so I persist.

 

My eyes, I think, continue to rebel. I have found that recently I have had to continually wipe my glasses clean in order to see better, or felt that I had to, without real relief. I am not sure what is going on, though. I believe I can still see 3-D okay. I just feel as if there is a scrim of something, a veil between me and the world…But it is more that than anything, and my usual narcoleptic sleepiness that prevents me from reading. Certainly not lack of interest and dedication. Still it remains very frustrating to me that getting through an entire book takes such a long time while writing is so easy (This is due in large part to my antipsychotic medication, Abilify, which I strongly believe facilitates putting words on paper, if insuring nothing at all about the quality of their ordering).

 

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Anyhow, truth to tell? The times are grave…I am attempting to work on a poem about Obama as Messiah and the concomitant end of the world. At the same time, I want to move to higher ground as I wrote in the earlier post, as soon as I get a spot in some other complex out of the Valley. That, however, could take years, I am told, as I am low on the waiting list, being disabled not a senior (I’m 56 and need to be 62 to be so classified, though the cut-off may be 65 by now)…

 

I do not know if the six years till then will be soon enough, and too, why continue to live if there will be social chaos and a catastrophic flood, famine and widespread panic, the predictable breakdown in all civil order…? I’d rather die, and by my own hand than survive to have to worry about being murdered by –

Argh, you don’t need to hear this, I think. But people are already  filling my head if not the halls with screaming and gnashing of teeth. I fear I may need to barricade the door… 

Up All Night…

 I was up all last night and most of the night before, checking out various places around the state and their relative, which is to say their absolute elevations above sea level and comparing them, hoping to find a suitable place to relocate. I need to move soon — within the next year or so — as the Antarctic ice cap could slide off at any time, not to mention the possibility of Greenland producing such a profusion of freshwater that sea levels would rise precipitously and catastrophically…

 

What am I talking about? Global warming and one of the most predictable consequences of climate change…. The scenario, as I foresee it, is this (and keep in mind that I am being utterly selfish, thinking of no one but myself here, no one but me and my own small circle of family and friends…): I live in the Connecticut Valley, inland it is true, but at sea level with nothing between us, nothing literally between my building  and the ocean  but the valley floor. If and when the ocean level rises there is nothing that will stop the water from simply flowing right on up the valley. It will not even need to climb a slope as, according to Google Earth, this building is literally only 10 meters above sea level. Even if there is some ground higher than that in between, the water will simply find a route around the high points, making islands of it, and continue flooding wherever else it reaches.

 

Why am I making such a big deal of this? After all, I’m 56, I’m practically elderly. I should think of the younger ones who…But I admit it, my biggest fear in the world is drowning, and I cannot / will not sit around and wait for that to happen, no, I must do something to prevent such a fate now, while I still can. According to Google Earth, even my twin sister is on relatively high ground  – 600 feet – compared to me, even though she is closer to the shore and further south. Nevertheless, she has not put out an invitation, even when I pointed out the disparities of  our elevations. My younger sister, too, resides in the Valley, but she is farther north, in Massachusetts, and at 66 feet is somewhat higher in elevation. However, just a couple of miles out of town, the area not far from her is 300 meters above sea level, so she can get out of Dodge easily when the floods come. I wish she  would move so she wouldn’t be in harm’s way at all. I simply know that she will not listen to me if I bring it up so it is useless to try to get her to prepare. In the meantime, since I cannot count on my twin or any family member or friend to take me in, I must try to find an apartment on my own. I must  get myself to a new town — which one?– somewhere in the northwest hills, where the elevations are the highest and pray that the worst of the worst scenarios does not happen. 

 

Yet I know it will, and I cannot bear to think of the hundreds of millions, possible a billion people who live along the world’s coastlines who will also be in danger when the flooding starts. My concerns are neither more nor less serious than any of theirs, only more conscious. It could be better not to be so aware of what is to come: ignorance of the inevitable  must surely be less painful than the agony of knowing a devastating future without any ability to change it.

 

When I contemplate the certainty of mass panic, the evacuation and stampede inland, the fruitlessness of it all, my heart pounds with a horrible anxiety, being unable to bear thinking about so many people suffering…It is then that I wish to be dead myself, wish to have it all be over. I  myself have nothing to offer those suffering millions upon millions, though god knows I would if I could. If I myself cannot save them or help them, I cannot bear to witness the end of the world either. No, I would rather not be there for it. If a billion are going to die, then let me die before they do! I do not want to be left behind in such a world–

 

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Someone ought to do a film on American prisons and the making of a “violent criminal”– from his/her start in the State system of juvenile care (foster, psychiatric and otherwise) to juvy to the vicious cycle of imprisonment and abuse in the so-called “correctional system” until institutionalization and/or brutal three strikes laws make it permanent…Those who somehow think that most violent convicts freely choose to become violent are fooling themselves or are willfully ignorant: the prison system creates violent criminals, period.

 

 Abu Ghraib did not arise de novo, out of some new bizarre impulse from “rogue military elements”. No, we exported U.S. prison guards to Iraq who knew the tricks of the trade because they already used them in American prisons. Yes, the hoods, the dog leashes, the humiliating nakedness and don’t forget the torture — all are regularly practiced, with impunity, in American prisons. Yes, even President Barack Obama still exempts as legal and reasonable, the use of torture in prisons and during the punishment of prisoners.  

 

In fact, the Geneva conventions read as follows: Article 1

 

For the purposes of this Convention, torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.

 

So even the Geneva Conventions agrees that while torture consists of inflicting severe pain on a person by official instigation or consent,  it seems to be allowed in the case of prisoners….EXCUSE ME? Prison guards can beat a manacled naked prisoner senseless and leave him in the “hole” for weeks, even months, no one saying a word about it, and it is fine with President Obama and fine with the Geneva Conventions? Well, I don’t think it is FINE at all. Especially not when the so-called resistant prisoner happens to have mental illness and is in “seg” because of it. Especially not when the prisoner is an 18 year old who just graduated from juvy, where he was sent after having spent years being shunted from one abusive “home” to another, molested in one and raped in another…and where he was not, beaten until he ran away and was sent to reform school. Now, in the Big House for armed robbery, is it any wonder he is both scared out of his wits and violent?

 

Pardon Bush? No Way…

I watched the inauguration the other day and wept. I wept for joy that we, the American people, have finally elected an African American, and a Democrat committed to Democratic values, to the presidency of this gravely wounded country. And I wept in grief that we have allowed ourselves to have been so wounded by the very men who were elected to serve us as leaders.

After the long dark night of the past 8 years comes the start of a new era, one I hope will be characterized by more truth and humanity than so-called “compassionate conservatism.” That of course was only window dressing to conceal Bush’s robbing of the national coffers on behalf of his cronies and his wholesale, deliberate abrogation of our essential rights, both democratic and human. Contrary to what Mr. Cheney asserted in his final interview, the administration did torture, did wage illegal wars and did despoil the air, land and oceans for corporate gain. “On-message” lies repeated over and over do not make the opposite true, however well-honed the practice.

From the secret energy cabal assembled by Cheney to our shameful lack of preparation for 9/11  (but once and for all, just how did the WTC towers and a third building at the site come down in a manner virtually identical to controlled implosions?), from the lies that permitted the vote for the Iraq war to the gutting or disempowering of so many regulatory agencies, OSHA to EPA — the administration now past is guilty of what could possibly be dismissed as political misdeeds. But to write off Bush’s deliberate breaking the FISA law and his decision to ignore the Geneva Convention and rewrite laws to permit torture is to collude with him and essentially to agree that he was right to do what he did.

No, I do not believe we can or should just “get on with things,” or let Bush get away with scot-free. I do not mean that we need to get revenge, though my angry heart harbors, I admit, some impulse towards schadenfreud. I think there is a difference between political misdeeds and crimes for which even presidents ought to be held accountable. And I believe that if we ourselves do not hold Bush to account for such issues as torture, the rest of the world would be justified in charging him with crimes against humanity.

I thank god that Bush cannot in fact issue himself or Cheney or anyone else a “blanket pardon” — not because he wouldn’t wish to, but simply because no one can be pardoned for a crime with which he has not been charged. It is this fact, that we did not impeach Bush while in office, that will permit charges to be brought against him in the future. I know that people have a tendency to want to move on, to forget (if not forgive) a past they cannot change, because it is easier than dealing with the messiness and difficulty involved in bringing someone like a former president to trial. But I believe it must and should be done. Too many have been grievously harmed and too many continue to suffer the consequences of Bush’s crimes. We do not have the right simply to  “forget” them, victims or perpetrators, simply because it is easier on our stomachs. 

"While I breathe, I hope"

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