One day I am up, or part of the day at any rate, and the next day I am down, or the next part of it. I can be cheerful in one moment and crying the next, and it takes little to bring on the tears, but equally little to cheer me up when I am in the mood to be cheered. I feel like a windmill, turning whichever way the winds of my moods blow, and not like the old creaky Dutch ones, but the shiny winged new ones that turn on a dime, shifting as quickly.

Usually what brings on the tears are thoughts of death, but do the thoughts precede the crying and sadness or the sadness precede the blackened thoughts? A good question.  Would I be thinking about the imminent end of the world and my role in it, and thinking of it so often and so desperately were I not already sad? Or does merely the thought of it, and the constant reference to global warming naturally stirs thoughts of it in me,  make me sad? One thing I know is that once I think and am sad, in whatever order those two occur, I start crying, desperately, torrentially, if not sobbing then the tears pouring down my cheeks in silence…

A wise friend suggested I try an exercise in distancing myself from the sadness, by taking a large waterglass and trying to catch my tears when I cry so hard. She says the suffering in the world all comes from a sense of loss, from not understanding that the nature of the world is impermanence, is all things changing…She says that all time is simultaneous, that there is no past or future, except what we choose to focus on. She tells me a lot of things that are difficult to understand.

Right now I am sitting in my living room/bedroom with all the furniture emptied and  crowded into the center around my recliner and TV because the painters are coming to paint on Wednesday and the only person who could help me move things had to come on Saturday. So now I have to live this way for the next few days, with nothing to do but use the computer or watch television, because most of my books, which I cannot read anyway, are packed away in the studio. That is now so full that I couldn’t paint or make jewelry or do art of any sort even if I wanted to. And in any event, I have been physically ill for several days so little appeals to me but lying rather listless in my big chair and stroking my cat! 8D

What a life, what a life…But I lie here thinking about the planet and I think about how I desperately need to find some hope, for myself, for the world, for my thinking about the world and my role in it, in its ending…and I wonder: am I sad or am I depressed? Is there a difference? Is it substantial? And does it matter? It matters that the world is ending, if it is. But is it? I believe it is. But many people, who I think are in  denial and in the dark, think that is nonsense. It matters a great deal if the world is ending, especially if it is my fault. It matters a great deal to me! But most people tell me that it is not my fault, and so far none have said that it is… Most venture only to say that the world will go on, with or without us, and perhaps it is okay if it’s without us…In any event, nobody — well, perhaps one alone of all my friends — seems as desperate and as hopeless as I about the situation, and we are both so hopeless we cannot help each another, only drown in one another’s tears.

Oh how we cling to what is, by that other friend’s definition, impermanent, ever-changing. As Heraclitus said, the world is “an ever-igniting fire, by measures being kindled and by measures going out.”

But is it depression or sadness? I have not felt truly well since I got out of M Hospital in the fall. Oh, I have felt better, and I have felt worse, but I have not felt consistently good, no. And I cannot shake this persistency of ready tears. My psychiatrist did not understand this until the day the tears fell in his office, along with my confession of how hopeless I felt about the world and its imminent demise, how guilty I felt about it. I was surprised at the alacrity with which he pushed an antidepressant on me, since I had not cried so before in his presence, not that I can recall. I thought he might have wanted to discern more of a long-standing pattern….But he scarcely gave me a chance to object. Just “suggested it” then reminded me that our time was up for the week, and he would see me “next week, same day, same time” same channel etc. I was to call him if any problems arose or I needed anything at all in the meantime. But i still had the new prescription to take too, and my visiting nurse would most likely want me to take it as directed. Since I was mostly an obedient patient, and since I wanted to feel better as well, I took it, having no particular objections to that medication. But has it done any good? Oh, I didn’t cry as much for the next few days, and we all thought, Oh, my what a wonderful drug, it has worked so very quickly!

But of course, no drug works that fast. If anything at all, it was a placebo effect. But likely as not, it was simply that other matters intervened and  the end of the world was put on hold as I dealt with matters closer to the facts of everyday life than teleology. Not that the “end of humanity” needs to be the equivalent to the “end of times” but to me if felt that way. Anyhow, I suspect that to those who deal with matters of “teleology,”  the end of times  and the end of humanity may mean much the same thing too, probably. (Who would care about teleo- anything were humans no longer around to think about such things?)

A month later, though, (and the dosage remains minimal, which may or may not be related to this) I still cry torrential tears at thoughts of death, dissolution and the devastation of the planet. I still feel overwhelming sadess upon hearing of anyone’s death, and mere advertising skits can make me tearful if emotional enough in the wrong way…Embarrassing as that is to admit. On the other hand, though, I can still write, I can still paint, and I can still make jewelry and cook and go over to visit Joe and  on and on. I may not always feel like it, but I do it, and that is what is important. And when I do art and write and  cook and so on, I make myself feel better, at least temporarily. So those are antidepressants in and of themselves, yet I could not do them at all, I think, without a certain level of energy above depression.

But as I started this, I go up and I go down, down, down. And maybe that is key, that I am not always depressed, just that I am easily dragged into the slough of despond by thoughts of bleak and utter despair, and whence those come, I do not know. Maybe from reality, cold and hard as a concrete floor, or maybe from imagining the worst. But no one  knows what will happen. The worst is only one of an infinite number of possibilities…

FRIDAY NIGHT VIGIL

Shivering, we struggle to keep our candles’ thin
flames alive as we gather, nineteen of us together
in the darkness of an approaching storm,
hoping the small flakes will not turn to ice
beneath our tires on the drive home.
But an icy wind keeps snuffing out each flicker
so we just stand, our signs alone aloft to passing traffic,
standing for the stand we take: for the changing world,
for a last chance at change. We stand for photos,
taken from across the streaming street –
and we smile into the night and show our signs.
One car beeps, a driver gives the V-sign in support,
but most drive on without a word or sign
that they have heard or seen a thing, or even recognized
we’re standing here for anything but hopeless causes.
My hands, frozen, release their glass and candle with a crash,
sending shatters glinting across the sidewalk. Someone
with safer gloves, stoops to sweep the shards away…
How lovely is the world today, even dying.
Though it’s all we have (and lord knows, it’s more
than we can handle) we stand here in this freezing dark
against the darkness and light one candle.

That is about all of the true story of the vigil, and about all that happened…We stood there and the traffic passed, and photos were taken and my frozen fingers dropped the glass holding my candle oh so greenly..Period. It was not without feeling or meaning for the individuals who stood there even though it felt utterly useless to me, and I was only there because a dear friend suggested it as an antidote to hopelessness. As she sees it, the only way to defeat despair is to take action, which is, I suppose, to paraphrase Hamlet’s soliloquy.  Now Hamlet goes on to talk about  death, and eventually to abjure suicide. But taking action did not help me much. Or if it did, the very loss of the glass in my hand, that crash to the sidewalk in the freezing dark, seemed to me the last straw, though none could tell it then. Indeed I  would never dream of showing it. But to me it was emblematic of the hopelessness of the endeavor, how it was all coming crashing down upon our heads, the great environmental movement, and nothing, nothing! would be saved on our grand sweet planet but sulfur-eating bacteria, black smokers, and undersea tubeworms. Nothing to be done now but to move inland and try to survive the cataclysm.

Except of course that not even that could be done, because nowhere is one safe, not really.  Tell me, where would you run to when tornados of category 5 tear up the heartland and when they do not, floods of epic proportion alternate with devastatng dust-bowl droughts?  When inland migration would put such a stress on cropland that famine results, and the slow, agonizing death that comes from it. The southwest? Where there is little water and temperatures already  soar past 115° in summer and sometimes higher? What happens when they hit 130°F? Would you  try the California west coast, with its record breaking wildfires and its ditto mudslides? And what exactly happens to rock that has been too quickly  affected by acidification  — does it really remain stable? What about in a region affected by vulcanism like the Northwest? Do we know for certain that  human forces do not change volcanic activity and purely geologic forces on and in the earth? Do not be so certain…But the east coast, surely you would not escape there, what with its sinking coastlines and/or rising sea levels from Florida to Maine…I do not mean to be a doom-monger, but I am indeed despairing, because I see a future of  chaos in the streets and madness and  fear on the faces of people wild to save themselves or at least their children and knowing in their hearts that they can do nothing…

STOP. Why am I going on like this…I do not wish to scare people who believe in hope and optimism. I do not wish to infect everyone else with MY despair. That is not my desire or intent. If I am hopeless, why make others feel it too? There is no point, even if I am right in my knowledge and/or my predictions. I cannot change anything, so why force  anyone to feel as bad as I already do? Perhaps Hamlet was right to suggest that “to take arms against a sea of troubles and by opposing end them” is not necessarily a bad course. It may be nobler than giving up, even if the action is useless in the end.

Do you know that I have scarcely followed the doings at Copenhagen, except cursorily, because I pretty much know that whatever happens it will be too little, too late…and that no matter what, the agreements reached will never, never! even approach the deep cuts in emissions needed to reduce present CO2 levels to the 350 parts per million that we need to regain sustainability on the planet. No, what I’ve heard is that the best of agreements settle for reaching and maintaining 550 ppm. let whatever happens to us at that level, happen.

God forbid we should radically alter the flow of the world’s economic thinking and activity, or even just the purposes towards which entrenched capitalism directs its self-interest! God forbid that Americans NOT be urged to buy buy buy “new carbon” in order to re-set a gobal capitalism and ever surging standard of living. God forbid that Americans should be told that their diamond standards — of living, of buying, of — well, everything, should actually be reduced…that they cannot in fact buy everything shiny and new, that used items are good items and trading between those that want to throw away goods and those that need them is a terrific idea, and much better than flying new carbon, and expending huge amounts of hydrocarbons in the process, from halfway around the world; that lawns are a terrible thing and vegetable gardens are beautiful, even postage stamp size or on the roof. There is so much we could do, if we are hopeful, if we are optimistic, if we believe that doing something is worthwhile and that we can in fact save the world.

Let’s try, let’s do something now. Maybe it is too late. Maybe it is useless. But we cannot sit around doing nothing, can we? That way lies madness and despair. We all die. It’s a given. Why not live now, knowing that something — even if it is only  the proverbial drop in the leaky bucket — can be accomplished, and  knowing that as long as we breathe there is always hope.

Dum spiro spero.

This is Pam W. in the spring of 2009. I am standing in front of the Inn on the Broad St Green in Old Wethersfield.

This is the famous and faithful old green recliner (Command Central) in which I do everything but Artwork and Jewelry making..I even sleep here at night.

In April 2007 I interviewed my best friend Joe for StoryCorps. This is the photo they shot of Joe, Me and Karen in front of the StoryCorps Airstream which houses the mobile soundbooth and recording studio. During the interview, which was aired on WNPR the following Friday morning, I had also to translate for Joe, who was losing his voice to ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease. By then Karen and I were the only two who could still understand him.

My official author picture, in color rather than the B & W version on the book flap. I do not like it as much as the one being used for publicity, which has been cropped from my photo in front of the inn.

My cat Eemie, about whom this poem has been written:

TOOTH AND CLAW

With silk sufficiency the cat,

that pedigreed aristocrat,

stalks her prey, the Rattus rat

amid the sun-dazed blades of green

where grackles feed on haute cuisine,

of kibble that was meant for Eem,

my scrappy feline, who’d prefer

the tang of rodent blood and fur

while June bugs rasp and locusts chirr.

With one sure leap of grand design,

she hooks his nape and snaps his spine

‘mid cabbage rose and columbine

then daintily she sniffs the gore

and drops her tribute at my door

as if I’m her conspirator.

According to an article in Medical News Today, researchers in Australia have found that antipsychotic drugs seem to have the ability to kill cancer cells, especially those found in the lung, brain and breast.

It seems that antipsychotic drugs in general, and especially Orap, or pimozide, an especially objectionable first generation drug — according to those who have taken it — and Zyprexa are particularly good at preventing such cancers, or so it seemed to those studying those schizophrenic persons who have taken them over the years.

This is strange, given that it is well known that those with schizophrenia and other major mental illnesses tend to die a good 25 years before their peers, though who knows how such results may have been skewed by such deadly illnesses as depression and anorexia. This is not to say that individuals with schizophrenia do not die early, by suicide as much as for purely medical reasons, but do we know that they do or do not die of cancer, when they die earlier than the so-called mentally healthy? And if not of cancer, what do they in fact die so early because of?

An interesting question, because if it is of the other usual culprits like heart disease and diabetes, then such drugs as Zyprexa are a double edged sword, protecting one from cancer even as it may induce the same metabolic syndrome of obesity, diabetes, heart disease etc that will kill them instead. Much good that does! For cancer patients, however, who do not have schizophrenia or Bipolar I, and who already suffer from cachexia and lack of appetite, the appetite stimulation of Zyprexa would be a good thing, even as it treats the cancer itself.

Who knows? It would be wonderful — it seems to me — for there to be other uses, perhaps just as important uses for Zyprexa than as an antipsychotic. Then it would not be under the threat — due to Lilly’s admittedly reckless indifference at best, and ruthless manipulating at worst– of being taken off the market which it seems often to be, what with so many lawsuits afflicting the company with regard to it. And what a boon to us who have suffered from the worst of the side effects. If we can manage somehow to solve the weight gain effects of our drugs, perhaps we will eventually outlive those who do not or cannot take them due to the side effects that THEY experience, which we ourselves may not.

Anyhow here is the article itself, should you wish to read it.

Fighting Cancer With Anti-Psychotic Drugs

13 Aug 2009   

The observation that people taking medication for schizophrenia have lower cancer rates than other people has prompted new research revealing that anti-psychotic drugs could help treat some major cancers.

A preliminary finding in the current online issue of the International Journal of Cancer reports that the anti-psychotic drug, pimozide, kills lung, breast and brain cancer cells in in-vitro laboratory experiments.

Several epidemiological studies have noted the low rate of cancer among schizophrenic patients. These studies found, for example, that these patients have lower rates of lung cancer than other people, even though they are more likely to smoke.

Genetic factors and the possibility of reduced cancer detection in patients have been considered and over the past decade anti-psychotic drugs have been suggested as possible mediators of this effect.

In the new study, pimozide was the most lethal of six anti-psychotic drugs tested by a team from UNSW and the University of Queensland. Rapidly-dividing cancer cells require cholesterol and lipids to grow and the researchers suspect that pimozide kills cancer cells by blocking the synthesis or movement of cholesterol and lipid in cancer cells.

Analysis of gene expression in test cancer cells showed that genes involved in the synthesis and uptake of cholesterol and lipids were boosted when pimozide was introduced.

To test the idea that pimozide acts by disrupting cholesterol homeostasis, the researchers combined pimozide with mevastatin, a drug that inhibits cholesterol production in cells. The two drugs were more lethal in combination against cancer cells than when either drug was used alone.

“The combination of pimozide and mevastatin increased cancer cell death,” says UNSW researcher Dr Louise Lutze-Mann, a co-author of the study. “We needed a lower dose of each drug to kill the same amount of cells.”

Although side-effects are associated with the use of high doses of these drugs – such as tremors, muscle spasms and slurred speech – these effects are considered to be tolerable in patients where other treatments have failed and the drugs will only be used short-term. These side-effects would be reduced if the drugs were used in combination with a lipid-lowering drug, such as mevastatin.

The researchers have also investigated the effects of olazapine , a “second-generation” antipsychotic drug, and found that it also kills cancer cells but has a better side-effect profile. When administered to patients, it accumulates in the lung, which suggests that it may prove to be most useful in treating lung cancer.

The researchers are now testing these drugs on tumour cells from brain cancers since these tumours are extremely difficult to treat and are frequently associated with poor patient prognosis. Patients diagnosed with glioblastoma, for example, survive less than one year.

The results are very promising as these drugs are greater than 50-fold more effective at killing glioblastoma cells than the chemotherapeutic drug currently in use. The researchers are also investigating the effects of these drugs on cells derived from drug-resistant childhood cancers where current chemotherapy has failed.

Another hopeful prospect is an investigation of another group of drugs, called SERMs, which are similar in structure to the antipsychotic drugs but have far fewer side-effects associated with them.

Source:
Dr. Louise Lutze-Mann
University of New South Wales

Main News Category: Schizophrenia

Also Appears In:  Breast Cancer,  Cancer / Oncology,  Lung Cancer,

Larry Neal might have been just another chronically mentally ill man living in Shelby County, Tennessee, perhaps not living very well, because he didn’t take his meds so he was often disruptive and committed petty crimes like loitering and panhandling and even “theft” — if you call pilfering supermarket grapes in plain sight of the clerks “theft.” He had been in the hospital, he had been in the hospital a looong time, from the age of 9 through age 28 or more because of mumps-induced case of schizophrenia, which is to say, known brain damage. But we all know what happened to the large state mental hospitals in the 60s and 70s: they dumped most of their patients onto the streets, unprepared  to deal with the world, and the world quite unprepared to deal with them. For many it made for a more than merely difficult situation and for some it was literally the beginning of the end of their lives.

This was the case for Larry, though of course no one close to him knew it at the time. When it happened, and indeed precisely what happened to him, no one in his family or his circle of relatives and friends knows today. All they know is that in 2003 he was picked up by the police for another of his petty infractions and instead of being dropped off at home, he was taken to the local jail where he was held, unbeknownst to anyone, and despite their many inquiries about his whereabouts, for 18 days. Despite the family’s putting out Missing Persons alerts, no one told them that he was in police custody, not until the 18th day, when the police admitted that Larry had died while detained — because deprived of his heart meds, his psych meds, bad treatment, abuse?  No one would say.

The very fact that no one would tell them anything forms a big part of this story and why it continues to haunt Larry’s family today. There seemed to be a cover-up and a potent conspiracy against their knowing anything about what happened from the very first.

I could tell you the rest of this very disturbing story, but I think it is much better told by Larry’s sister, Mary Neal, who knows all the details and relates it with better accuracy than I ever could. That said, I am going to refer you to her website and encourage you to read the entire thing, lengthy though it is. Mary is and was Larry’s champion and she continues to advocate for all the mentally who are incarcerated and against the practice of incarcerating those with psychiatric disabilities at all. Her website is truly worth reading, even though it is upsetting because of the profound injustices perpetrated on both Larry as well as his survivors.

I hope as many of you as possible will also want to sign Mary’s petition and write your congressional representatives about getting better treatment for incarcerated psychiatric patients.

http://www.WrongfulDeathofLarryNeal.com

Finally, last but far from least, here is a powerful poem Mary shared with me in the comments section in this blog recently. Alas, it is buried so far back that you might not see it. Because of this I asked if I might post it here. I think it is terribly a propos of this story but also of just how poorly those with a chronic psychiatric condition are treated compared to, say, Michael VIcks’ dogs… This is not to say that the dogs should not be rescued and treated well, only that Larry Neal and people with mental illness ought to be given at a minimum equal compassion.

DOG JUSTICE

by Mary Neal

Too bad you weren’t a dog, my Brother
In my heart, I cried
Many more people would care about you
And wonder why you died

You had no spots or floppy ears
You never fetched a ball
Instead, you were a human being
But poor, black, and flawed

You died in jail for mental illness
I know down in my heart
Your death would be investigated
If only you could bark

Dog deaths get swift justice
Their abusers are sent to jail
Poor Mama would have closure now
If you’d had a wagging tail

But you were made in God’s image
And some day, I have no doubt
The mentally ill and American dogs
Will have at least equal clout

(All rights reserved.)  Mary Neal

You can contact her at : Marylovesjustice@gmail.com

make this site more interesting. To find the “rate this” area, click on the title of each post. When you are taken to the next window, scroll to the bottom and choose the number of stars you think the post deserves.

Much appreciated,

“The Management”

NOTICE: the “identicon” next to each commentator’s name is an avatar based her or his email address automatically generated by this site. It was not chosen by anyone in particular.

the same WAGBLOG…Don’t forget to come and visit! New posts will be up soon. For now, check out the bottom third of the “ALS, or Lou Gehrig’s Disease: A Confrontation” post as it is new as of this morning. (Look for it in the Archives page)

Because of my having switched from Dr C to Dr B (aka Li) I did not pursue the issue of TLE any further at the time I wrote those blog entries back in April. However, recent comments here have recalled the issue to me, and reawakened my interest in finding out just what is going on — though that may take some time as I am still up in the air about whether or not I will stay with Li or try to find a female psychiatrist after all. Li has been on vacation these past three weeks, so I cannot truly say anything, but I must say that absence has not made me grow any fonder of seeing him! In fact, it has only solidified my distrust and dislike, which was more or less lying low and trying to give him the benefit of the doubt for the time being…Following whagt Dr O urged me to do, that is.

Be that as it may, it just might behoove me to take the proverbial bull by the horns and present Li with these pages, the two TLE posts and see how he reacts, see if he can or will help me pursue the ideas contained in them, objectively, not jumping to conclusions immediately but in a let’s take it slow and wait and see mode..My fear is that either he will jump on one bandwagon or another, not truly thinking about me or about the consequences of his easily accepting either diagnosis.

I was struck again though with several symptoms I have had for a long time, that were emphasized in the “Seized” book by Eva Laplante. First of all, chronic paranoia as a neuropsychiatric presentation, personality changes too, with sudden outrageous impulses (they specifically mention stripping naked and running outside!) and then, strikingly, those signal hyperintensities seen on the brain MRI scan. All this with relatively healthy “inter-episode” status…There, though, I can’t really say, as for years I was NOT healthy between bouts. In fact, I was almost constantly in the hospital, though perhaps even there I had my good times and bad, with the ups being times of good functioning.

One of my commenters, E, mentioned the difficulties he felt he would face “giving up the identity of someone with mental illness.” Yes, indeed. While I have in fact never FELT that I had schizophrenia or mental illness, always mentally resisted accepting that diagnosis, or any but the infectious disease etiology of Lyme disease, I would have trouble dealing with the fact that I could no longer speak for my “siblings in the struggle” of schizophrenia not if officially i did not belong in their “category” any longer! Forget the weird fact that my symptoms so strikingly resembled theirs, and that they felt I told their story! Forget that they all felt I had helped them immensely. It would all go for naught, because I would no longer be credible as “a schizophrenic”. Now personally it is a small price to pay, as I never felt I was schizophrenic to begin with, though I would not like to have my books become something of a farce…But I would indeed feel bad for those I wanted to help with all my writings. Who would I speak for if not them? And I would have lost my community, so to speak!

However, I do not think the issue will be that easily resolved, not unless I have one of those deep EEGs and it is positive…But I doubt it would be, even if I could have one. They don’t do them here, only in New Haven, and even then I am not certain how definitive the results are: if you do not show abnormalities does that completely rule out TLE or only indicate a negative showing at that time? I did have two EEGs separated by years, both time while I was on anticonvulsants, and neither one showed any seizure activity, but I have been told that regular EEGs often do not indicate TLE anyway. So I am not sure how they would determine TLE for certain versus schizophrenia, except by a preponderance of opinions of various docs. Well, so far, not a one has actually diagnosed it or even gone as far as to suggest the diagnosis. All Dr C said was that I had TLE insofar as I had olfactory hallucinations, but he said nothing whatsoever about my schizophrenia…Maybe he would have, but I got paranoid about him and left before I had a chance to find out.

I wanted to go back to that APRN, because I did like her and thought I would be comfortable with her. But I didn’t think she would be up on TLE when I met her, and that was what made me NOT go with her in the first place. Aaah, this is what made me want to see a doc in the first place, and I must remember my goal. I want to find out about this, get it over with, or under my belt or whatever the proper expression is. I want to find out from someone who knows, what the possibilities are…Maybe I ought to start with a neurologist, and skip the psychiatrist altogether? I never thought of that. Perhaps that is the way to go, but the thing is I do not like anyone in the group that dominate the local hospital…And I do not know anywhere else I can see anyone…Nor who would in fact be good. I cannot bear to see someone cold or uncaring, or incompetent! But how to find someone I could both trust to be, well, someone I trust and someone who is bright enough and interested enough to get to the bottom of things?

P.S.

I found this very interesting article in iGoogle for scholarly articles: http://neuro.psychiatryonline.org/cgi/reprint/9/2/293-a.pdf

If it opens properly it should bring you to an informative article on TLE and psychosis and psychiatric disorders “ictal and non-ictal,” which means, for those of you who don’t know the word, psychiatric disorders seen with the seizure and outside of the seizure.

His honesty I mean, my new psychiatrist’s (Li’s). For instance, when I went the first, second and third times, he gave not the slightest indication that he knew me or even of me, and when I mentioned that I was a writer and had written DIVIDED MINDS, he acknowledged only having seen “some twins” on CPTV (our local public television channel) and was wondering if that might have been me…

Now, as of my most recent visit, I come to discover that Li had known all along who I was and that I was the same person he had seen on the TV show and that I had written said book. For all I know he has already read the goddam book and has not admitted it even now. Worse, he admitted this last time that he recognized my name and remembered me from the times in the 80s when I was hospitalized  at a local psychiatric unit right — he had been the chief resident at the time it so happened and would get reports about me and listen to discussions at grand rounds, apparently. He had this info right from the very first phone call I made to him, i.e. when I left an initial message on his answering machine he knew who I was.

Essentially, quite despite my plea at the very first visit that he be honest with me and “never deliberately lie to me” he has decided that honesty would be only on second thought with me, just one out of several strategic possibilities and not his first and only approach. I do not understand this, but it both scares and upsets me terribly. For one thing, I fear enormously that it signifies that he too is part of  the great DO conspiracy I have mentioned so often, if not here then in my older Wagblog. This is not to say that Dr B (Li) s a DO (doctor of osteopathy equally trained in psychiatry and medicine as any MD); he is not. He happens to have attended the same med school as I did, and did a residency as I said at a hospital I was a patient at several to many times.

However, the DOs who have treated me, or been assigned to me, have to a one been in on this conspiracy to tag me as a drug-seeking addict because of my narcoleptic need for Ritalin (a condition they dismiss as either faked or at a minimum not real, merely claimed). As a consequence, they have treated me abysmally, not taking any time to deal with any of my physical complaints but “assuming ” all to be likewise connected to these putative “false claims” of narcolepsy, which is to say not real either. I do not trust Li NOT to fundamentally to believe this, and therefore, despite his dispensing the medication (just as other MDs did in order to “placate me”), to regard me with skepticism, even cynicism. In this case, I would find it impossible to continue to see him, being  likewise utterly unable unable to trust him  — naturally — to take me seriously because of course he never would.

The thing is, I am no longer willing to argue the narcolepsy business. I know I am innocent of any such charges of faking or simulation, and do not need to excuse or explain myself to anyone who questions it. I know how sleepy I have been since the age of 19, and know how disabling the sleepiness has always been. I also know that I have never abused Ritalin, only that I always needed a certain therapeutic dose that no one ever tried to find, because no one ever trusted me to need Ritalin from the get go (despite a diagnosis in the early 80s by a neurologist, Dr Neuren, at H.  Hospital, following an EEG that might not prove anything now, but was enough for him then…). Once that dose was determined by Dr O, a sleep specialist and psychiatrist, I have not needed more and in fact have usually used less than that on days when my chronic sleepiness has not been overwhelming or I have been able to stay physically busy enough to stay awake. I have also learned not to fight taking a nap, and sleep on demand most days, even when that means twice or three times a day, say from 6pm till 9pm and then from 2am till 9am plus another nap the next day at 11am until 2pm…

But where was I? I was speaking of the conspiracy, and I do not joke. I believe quite firmly that these DOs have been infected by someone else who believes it, and have swallowed her opinion hook line and sinker…but be that as it may, if Li himself also refuses to see beyond whatever he recalls of me from the past, then it is useless to continue. I do not even want a “second chance” or to be given the opportunity to somehow prove myself. I do not need his approval or his acceptance of my diagnosis of narcolepsy. I do not need him to believe that I have it, or to give me Ritalin on the basis of some begrudging agreement that he will do so, but only because he does so for so many ADHD patients that he is not afraid for hs license…If that is his attitude, well, F___ him to the max and up the A—!  I don’t need that sort of BS and will willingly and immediately dump him and go elsewhere.

Iin faact, he ought to have “recused himself” before even taking me on and admitted that he already knew me and could not ethically do so, because he already had formed a negative opinion of me that I would have to change…

THIS is what I fear, basically. I do not know if I can surmount this. I do not know that Li can reassure me it is not the case. I do not know that I can ever trust him again, given his recent admission of betrayal, however much it was a “sin of omission. He knew full well what he was omitting and why, and he also knew that I was asking for precisely the information he withheld…

__________________________________________________________

I am going to take off the week of Aug 2-9th in order to be absolutely left alone, because I know no other way to get my thoughts in order and to have some time to get both work and some artwork done…I can’t seem other wise to allow myself a workweek, and feel like no one else will. At least no one respects my right to be left alone during the week, not even at the hours I requested, and I feel so bound to answer the phone and email that I can’t even let it ring between the hours of 10 and 5pm without answering it. Also, I cannot turn the answering machine down, so I have to listen to it, which is a really awful way NOT to “answer the phone”, because they “get to me” anyway that way…So I am taking a week off, to think about how to deal with this, and also to work on my own things.

I hope I can do it. I am lying to those I cannot tell the truth to, those who will not let me be and do what I need to without making me feel guilty, and I am telling the truth to those with whom I can be honest without feelng that they might spill the beans to the former or try to intrude on the week. They know who they are…and the others do not read this blog.

TTFN.

The first time I visited the office of Dr CLB I had good feelings, even though, as a new vegan (more on that in another post) I noted that his waiting room chairs were all upholstered in leather, even though they were “just” upright chairs, not armchairs, which is where you usually, which is to say, often, find leather being used. In point of fact, the entire building was much more opulent than I was used to, being in a part of the country that once had the reputation for being one of the wealthiest communities in the U.S. or at least in the state. No more, but its past showed there.

I walked in, and due to what I think is my continuing lack of depth perception, I mistook a central large planter in an atrium-type room on the first floor for an island in the middle of a large pool, adding to my initial impression of opulence. The elevator was, whoosh, silent, and took me to the second floor as if without moving, in contrast to the one in our building, which makes each floor a noticeable journey. (Since then, having discovered the stairs, I take those instead, finding a two story elevator trip rather silly.) It then opened on a thickly carpeted hallway, overlooking the pool/atrium, lined with what to me, being there the first time, appeared to be huge, expensively appointed wooden doors. Not just your ordinary run of the mill painted ones, mind you, but heavy imposing grand ones indeed, of stained wood that look like mahogany or cherry. The carpet is a deep rich color with an eye dazzling pattern that I find I cannot look at without getting upset. I easily found Dr B’s office, entered through the outer door, then the inner one to the waiting room, where I sat in one of the leather chairs mentioned earlier.

I knew Dr B vaguely, or knew of him, since he had been a resident or chief resident once at a hospital where I had often been a patient in the 80s, though he had never treated me, nor had he had any individual interaction with me. He has so far never given me any indication that he knows or remembers me, and so I have not asked, though he did say that he had heard of Divided Minds and had seen Lynnie and me on public television, though did not make the connection until I mentioned that I am a twin, and that my sister is a psychiatrist.

Anyhow, that first meeting went well, largely I think, because I felt very well, and because I feel comfortable answering questions, which he asked in abundance, that being an initial, Getting to Know You, session. After that, he has stayed more quiet, which is difficult for me, as I am much more used to Dr O’s directive style, wih her taking such an active role in therapy. It is hard for me to start each session, or take charge of my own therapy. I am so used to simply talking about the previous week, which always worked well for me with Dr O, because it always brought up enough “other stuff” to discuss that we were never ever at a loss for subject matter, not once. But I find that without L’s direction, and without his asking me questions, I feel, I dunno, that I don’t know what to say. I am  so used to Dr O in some sense picking out from my initial answer to the question about my week or even from, How are you, what exactly is most important, that I am simply flummoxed.

I told Dr O that after she left I would most want to work on 2 things in therapy now 1)  gaining “real self-esteem” about who I am, not just for what I do — self esteem meaning, not feeling evil and worthless and to blame for, well you know about all that… and 2) learning not to be or to feel paranoid in life, as well as about specific things. But those seem such tall orders and indeed so intertwined…and I do not know how to work on them, esp with someone like Dr B — L, as he said I could call him. He does not know my history or how deep these things go, how persistent they are and have been.True,  I gave him both of my books, but fear that he is not a reader and in any event has way too much to do to read either one any time soon. He has not even taken the time to call Dr O, or perhaps doesn’t really want to, I dunno. All I know is that he keeps telling me he will, but never does, never did before she left for her trip to Bhutan. She is leaving for good on the last day of July, and I am beginning to doubt that he will manage to speak with her at all before then. It is possible that he does not WANT to, but he ought to say so, and tell me why, rather than simply ignore my request and pretend that he simply missed her by accident…

The introduction to my poetry book gives some idea of my history, and I know he read that, so he has a very small idea of some of what I have been through…snuck in through the back door. But unless he actually reads Divided Minds, which is only part of the story, or talks with Dr O, which is itself only another part, he won’t understand those parts of my history…I understand myself that he might want to make his own assessment. But he needs to really grok that I am not the same person that I was for 35 years, and that he cannot judge my illness or anything about that from me now…I so resent people who discount my past because of that, pretending that it somehow doesn’t matter or didn’t matter, because of where I am now. FOr example, he keeps saying things like: you have this condition that occasionally makes you…As if this is some minor inconvenience or has only had minor consequences for me in my life, rather than having deprived me of 35 years…When it was, as you all know, horrendous, and took so much away from me…Only you guys can really appreciate that. Only you people can truly appreciate the magnitude both of what I have been through a well as the journey I have taken to get to where I am, and I appreciate that no end.

Anyhow, one of the problems with seeing L, apart from whether I can work with a man (which I do not think by itself is any problem at all, though whether I can work with him might be) is that — well, let’s just say that I both felt terrible last session and left there hating myself, hating him, and feeling that I had to leave and find someone else. Feeling like I was contaminating him and that simultaneously he wanted to get rid of me, was laughing at me, and was, I dunno, bored with and sick of me. I also detected what I felt was a note of falsity in his voice, something that sounded like it was using “tried and true technique #2” on me rather than being human and honest…

No one can know, despite my cheery and busy exterior, the depths to which my self-hatred plunges me at times, and frequently, though often without warning…It is not a mood, not at all. It is a building up of thoughts that tip me over a precipice that I need to watch out for. Because it is that precipice of guilt piled upon guilt, and thoughts of how evil I am, piled on top of all that — even without command hallucinations to spark it, OR perhaps it is that missing factor that has so far stopped me? — that lead me to impulses of wanting again to self-immolate, or at a minimum set part of me to the flames. I cannot tell you how often those thoughts arise, and how easy it would be to give in…What good I would feel I was performing for the world, by exercising myself to make such an ablution and atonement!  At the same time, I would be exorcising the evil in me, and if necessary, preventing such evil from infecting more of humanity. But I don’t follow the impulses, nonetheless. Why? Largely because I fear the real time consequences, which I so far manage to remember in time. Consequences? I imagine you think I mean, the burns themsevles, or the pain or soemthing immediately consequential  like that…, no? But it is not that which I fear, only the potential for being locked up if anyone found out that I would dread and which prevents me from acting on my wishes…Otherwise, I would pay no attention. And I refrain too, more easily, because there has been no extra urging or push to do so in the form of those command hallucinations that are so hard to ignore. Thank god for that.

In fact, I have heard NOTHING in the way of voices since February, not that I know of, or at least, nothing that I recognize as “voices” except the occasional name calling, which might in fact have been real.

I am exhausted at the moment, and having trouble distinguishing dreams from reality again, dunno why. I do not for example recall  when I last saw Lynnie, but am convinced that it was recently, and that there was something going on…But my dreams are so realistic and I also remember that my touchstone was always IF you have to ask if something is a dream or real, it is pretty certain to have been a dream! Nevertheless, this is an unnerving development, as it has not been a problem for some time…

I have to write a poem on the word “beach” for the writers group on Tuesday on top of a thoussand other commitments, so I’d better quit here. But there is much more to say and I hope to get to some of it in later days, including my depth perception, veganism and how that is going, and the developments with the book.

*** WE MAD CLILMB SHAKY LADDERS: if you have had trouble ordering it from Barnes and Noble, It IS AVAILABLE. They only tell you it isn’t, because they may not carry it. You have to go to the store and ask them to order it. But I suggest you get it from Amazon for a discount or from http://www.upne.com  to support the press and pay full price at only 4 dollars more. Either way, if you could write some sort of review or at least put your opinion of the book in stars at the site, it would be great. Also at http://www.goodreads.com  THANKS!

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.

—————————————————————————–

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.

————————————————-

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.