New Poem: The Rape of the Hug

THE RAPE OF THE HUG

How

do you say no to an honest hug

from a good man who likes you and wants

perhaps to love you? Does he

completely understand

how you have spent your life in institutions

and only entered the adult world at age 53?

You still have so much to learn

about being a person outside of a hospital…

Does he – does anyone? – know how dangerous

even loving human contact is

how all contact is rape

even the gentle hugs you have

been tutored to give relatives and friends.

You only withstand them and hand them over

but you do not like them.

Though you know no harm is intended

if done, when he prolongs the hug, stands closer

and turns his head towards yours

you sense the threat

of a kiss you can’t for fear of hurting his feelings

though you feel no feeling

of wanting it

refuse.

Roy (not his real name, though there is no chance of his seeing this) and I communicated  almost exclusively by means of notes passed under one another’s doors for a long while. Oh, we would pass in the foyer or in the elevator and occasionally exchange greetings or ask how the other was doing, but we never had much in the way of conversation. I was always going somewhere or coming home from seeing Joe or Cy and was much too tired to want to talk. Also it was awkward to have a conversation in such a public place, what with the bored biddies in this place being so nosey and overly interested in what we might say to one another, however harmless.

You have to understand that this building has 250 units for the elderly and disabled, but it is in essence a community, and though some people like me keep to themselves, we nonetheless cannot help but recognize many of the downstairs regulars who sit in the lobby or in the community rooms and watch comers and goers and gossip about nothing all day long. Or gossip and spread rumors and hateful talk. There is a “circle of friends” that I hear is rather in-bred and exclusive with which I have nothing to do, being uninterested. But I know that others feel left out of it, and are in fact excluded. The Circle holds dinners downstairs and each member pays $5 a month for dues but they charge non-members $20 if they want to join them for any one dinner. I cannot imagine why anyone would, but there you have it.

Anyway, to get back to the tale (and I am telling it, mind you, because I am trying to get my mind off much more serious matters, of which I cannot speak at the moment…) Roy had not put any notes under my door for a few months when suddenly one appeared a  couple of weeks ago. I had been feeling extremely troubled, and still am, so the note was welcome, as Roy has a philosophy of life that is very salutary and calming. Even if I cannot share it, that is, even if I find myself unable to trust it or believe that for instance this earth and this life is merely a school where we learn what we need to learn before we shed it and go on to what we need to learn next, even if I cannot believe that, I still like to hear him talk about it (in his notes). I responded and told him honestly how I felt, and what was going on that Lee, my doctor was concerned about as well. Roy responded by appearing at my door with a set of CDs — no, he couldn’t stay but he wanted me to listen to them, he thought they might be helpful — from the Dalai Lama discussing how science, specifically quantum physics and religion, especially TIbetan Buddhism complement one another.

No, perhaps memory doesn’t serve. Perhaps that was the time he did come in, did stay and we talked for about an hour before he had to leave. It was a very enjoyable conversation and I told him so. I told him specifically that he was not at all like Jacques, who came frequently to lecture me and pontificate about Thomas Merton and force his own poetry on me and never let me get a word in edgewise and if I did, gave it no thought or response. Our conversation, I said to Roy, had been an actual sharing, a con-versation in the real sense, not a monologue, and I appreciated that.

When he left he asked me to accompany him to the door, I said, sure, and got up, but felt a slight frisson, suspecting why he had asked. Indeed, I was correct, for at the door he turned and opened his arms for a hug. Not knowing how to refuse, and feeling unable to, I let him hug me, and tried to respond, though it was difficult and he sensed that, saying, “It can’t be that bad…” with a laugh. But he held on a long time, much too long for my comfort. Not that I was comfortable in the first place.

Then he said goodbye with a smile and blew me a kiss and left.

Well, that was that. He continued to sent me notes and one asked me to lend him my book of poetry. I left one in a paper bag at his door, telling him he could keep it. He hung the paper bag back on my door with a note that contained only a big smilie and an exclamation point.

I listened to one CD of the five he had lent me. It was difficult to pay attention, but I eventually managed to do so, washing dishes. Then one evening Roy knocked on my door (he has only a state-issued cell phone with very limited minutes on it) and I let him in. Again we had an enjoyable conversation and again when he left…well, the poem tells that tale.

But this time, well, I had to tell him how I felt. I knew that it would do me and him no good if I simply went along with this and pretended. I could not do it again, and just continue to feel raped. Things would eventually progress to a point where I could not tolerate even pretending…So I sent Roy a note explaining that while he had read both my books and thought therefore that he knew me well, I knew much less about him, and that he needed to go much slower.  I did not enjoy hugging, not yet, and I was not experienced and did not know the ways of the world. I also said that I was used to rejection and would not fall apart if he never came back. I expected rejection from everyone so it would be nothing new. If he rejected me, well, that would also tell me something about him I should know now, before we got too close. I put the note under his door, and waited to see if a small yellow piece of paper, or even several, came back.

Well, I waited all the next day, and the next and the next. But no note came. Yesterday I returned the CDs in the same handled paper bag, and no note came. So I guess I know what Roy was all about, don’t I? It upsets me, as I liked him and thought he was deeper than someone just trying to get into my — well, you know the expression. I hate to think that that was all he was interested in, but maybe that is what motivates all men, after all. I do not know, truly, I do not. I have not had enough experience to know.

It is not that it had to be a platonic erelationship, I was willing to learn about relationships that were more than that, only that it and I needed time to grow. He ought to have known that, having read DIVIDED MINDS. But apparently like the men who forced sex on me in my younger years, he thought that he was different or better or — something. Well, he isn’t, wasn’t, and I learned my lesson, again.

Depression or Sadness?

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…

Global Warming: Poem for Vigil

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.

Stereopsis or 3-D Vision: The Pure Experience


SPACE, MATTER, LOVE

The world is charged with the grandeur of God.”  Gerard Manley Hopkins

December, first snow, 2009

Who hasn’t said, “You don’t know what you are missing,” when speaking of something she believes another ought to experience– sky-diving, say, or a certain exotic brand of coffee or the pleasures of her favorite restaurant. Because I was unaware for years that I lacked depth perception this was literally true: I did not know what I was missing because I no longer remembered what I had lost. I had in fact no idea there was anything to lose. But with prisms in my glasses, and after months of vision therapy and eye exercises, experiencing 3-D, or stereopsis as it is properly called, was as spectacular as it was elusive of description. Nevertheless, I am nothing if not a writer and so I do my best to put it into words and show you.

Early this morning I went to move my car from the snowed-in parking area and found myself at 5 a.m. alone outside. The street lamps next to the building were on. I could clearly see snow falling against the dark sky as I headed towards the lot. Suddenly there was a nearly audible click in my brain and everything changed. I felt as if I were in a snow globe, inside the snow, separate flakes plummeting around me, each on a different plane, riding a separate moving point in space as it fell.

I looked at a bush with its bare twigs, the ends of which were mounded with snow.  The contrasts in it were heightened, with the boundary between the blackness of twigs and the white snow crisper than I’d ever seen it. Everything was silent. Along with the exquisite clarity and precision of detail, a rush of affection for the universe knocked me breathless.  I stood there smiling. Had I ever seen anything more beautiful than what space had done to this bush with its twigs of snow?  This was not the negative emptiness of which some art critics spoke so passionately, but something positive like an embrace. It is difficult to convey what I mean by this: when we speak of space we usually mean the empty gap between masses, between physical entities or things that matter –after all, isn’t that why we call them matter? But in this instance, I meant space as sculptor of reality, and as artist and sculpture both. Space was the loveliest thing I had ever perceived. It had mass and, by virtue of its own volume, gave substance to the objects surrounding it.

But I could not yet put all this into words. At the time I just smiled, and gazed at the bush and twigs and sidewalk and streetlamp in a kind of dazed wonder.

I went back inside to write at my computer. Just as I sat down and put my hands out — out! how lovely that my hands went out into space, I thought –  the keys on the keyboard drew my eyes to them. My heart ached at the sight of the fraction of an inch between each key and the computer. The space that was their height above the computer took on a numinous quality that would not let me withdraw my gaze. My typing fingers too. Not only that, but the sheer fact that they were above the keys, the space between fingers and keyboard, then the way embodied space gave form and substance to the small squares –indented just slightly to fit the pad of a fingertip – all this made me laugh with tenderness and delight. I was full of bubbles. Why, the entire world was friendly!

I circled my rooms, hypnotized by space, by how space made everything important. How profoundly dishtowels spoke to me, saying, Towel, Towel. The threads stood up, cupped and defined by emptiness, each one loved into being by the artistry of space. Terrycloth folds were utterly different from a fold in paper and yet that folded paper, bent on an angle around a “shapely void,” struck me as infinitely loving. The sculpted space on each side of the fold was so exquisite it brought tears to my eyes. On I went. Doorknobs yearned, reaching out from doors into space. Bookshelves provided a welcoming recess, intimate and implicit with corners, as if saying, Come in, we will protect you. What a delicious concavity each spoon was, a miracle!  My circuit of the room would have been ridiculous, had not everything been so lovely, and so thoroughly devastating.

Mere words hardly serve to describe how I perceived. I felt seized by joy, by delight and yes, by an overwhelming love for all that my eyes alighted on – snow-covered bush, computer keyboard, a friend’s hand extended  in comfort. I know that most people understand the first and last, but few are mesmerized by spoon or towel or indentation of computer key. This troubles me. It is easy to love nature or one’s friends. But I suspect overpowering love for every literal thing is not prosaic. Space sculpts the world, and I was abruptly and unexpectedly given the gift to love all of it. Surely such a gift is available to everyone, yet it seems inaccessible, except largely to those crazed by either drugs or illness. Or to others who have regained, even temporarily, long-lost depth perception. Perhaps because so many have always seen space, they have lost the ability to perceive how beautiful it is and to feel how it embodies.

Later these visions, these perceptions faded along with my new but brief ability to perceive depth at all. But I remember near the end looking into a certain receptacle and being bowled over to see that it had a rounded interior. The sheer “interiority” of it, as well as the fact that it implied roundedness so matter-of-factly that I didn’t have to feel it to know it: why hadn’t I understood before? It struck me as sad and yet the most transcendent discovery of my life. If the world was charged with the grandeur of anything, then that something was the positive, optimistic Shaper of things, their Creator, which we instead call, as if it were nothing, “empty space.”

This is a tragedy and not merely for the individual of normal vision, but for humanity, most of whom will never experience a love for spoons and doorknobs or computer keys or hands above the paper or, by extension, love of every object and every nose and every creature in this world, of every thing and all matter, which is shaped by the Space that loves us. This may be the reason we have done what we have done to the environment, the precious matter in the Creative Space around us.

Because we could not see and therefore could not feel how space is the Creator and loves the matter of the world, we have destroyed it, and ourselves in the process. How could we have done otherwise? We did not know.  We did not see. And we could not feel the truth: that Space is Love and loves the world and makes us, and all matter, beautiful.

Narcolepsy and Sleepiness: I wake and sleep and sleep and sleep

I am always sleepy. I am always sleepy.  I am always sleepy.

That said, my best time, if I have had enough sleep the day/night before, is after midnight. Dr O — whom if you recall I now refer to as Mary in most other contexts, since she is no longer my doctor and has temporarily retired from the “business” or is “on sabbatical” as she calls it — told me once that the notion of some people being “night owls” and some being “early birds” is a real phenomenon and not just a myth, that in fact there are reasons why certain people like me prefer the hours post-midnight and feel most alert and alive then, and why I claim that it is then that I get my best work done. As I understand it, there are actual “chemicals” — I hate that generic term for more specific biological substances! — which impel a person towards sleep and that these are at their lowest in the morning and constantly building up during the day until for most people, or at least for those whose drive to sleep peaks at around 10 or 11pm or so, the sleep pressure is such that they feel the urge to sleep and usually do so easily around that time. (I think this is modified somewhat by the fact of artificial light and that in fact were we bound by (some would say limited to) the natural cycle of daylight, our “sleep chemicals” might take on another pattern, pushing us to sleep whenever it got dark enough that sleep was our only recourse. Of course, we still don’t really know why we sleep at all, but the fact that there is nighttime, that it is too dark to see in and do anything in, or was before we acquired artificial means to light up the darkness, and that there is nothing to do then except sleep seems to me to be reason enough. Better sleep than fidget! And better sleep than try to venture outside of your warm cave and get yourself killed in the dark…

But as I was saying, I am always sleepy. Or almost always. Sometimes, when my medication is actually helping me, and when I have added to it a strong cup of coffee (often it seems that the coffee is a more effective alerting agent than the methylphenidate, oddly enough, since I can easily sleep through 40mg of the latter but not through the 150mg of caffeine in a cup of coffee …) I feel somewhat able to get things done. No, I can’t read, or not very often. Reading more than a few pages is usually beyond my concentrating abilities. This is partly because my eyes, with their strange tendency to conflate inability with lack of desire, reject it and partly because reading simply overwhelms all the powers of any alerting agent to keep me awake: To sit down and read and stay awake seems literally impossible. However, years back, in the 1990s and early 2000s, when I took Zyprexa 35mg, reading was massively important to me, more important to me than any other activity I could imagine (due to the Zyprexa having wakened me to the world…). Dr O, who became my sleep specialist as well as my psychiatrist in 2000 and so was able to monitor both my schizophrenia as well as my narcolepsy, was aware of this and treated it with both methyphenidate SR and ER and Provigil and sometimes Adderall as well. These in varying combinations plus the Zyprexa were at least helpful. I remained sleepy, and continued to suffer from hypnogogic/hypnopompic hallucinations — that is, REM intrusions into waking states, or dreaming while awake, and not just when getting up or falling asleep but in the middle of the day — but I was alert enough to read as much as I wanted to, at least during part of the day.

Now, however, my eyes refuse to let me read, even when it might be possible. And when I do  at least try to read, that is, when other activities such as writing are possible and so reading ought to be as well, I find myself falling asleep because of eye strain and fatigue. Talk about a vicious circle. Yet I will work around both of those in order to write! Weird…Even now I can barely see what I am writing, have to contort myself to “get around” the confusion of dancing and shimmering letters, but I continue to write nonetheless, as my eyes do not refuse to do that. Yet they do and would refuse to read someone else’s blog, especially anything longer than a short paragraph, if that.

Sleep sleep sleep and that well known “ravell’d sleeve of care” as in Shakespeare’s MACBETH:

“…Sleep that knits up the ravell’d sleeve of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast….”

Balm of hurt minds…Indeed, yet I did not sleep well last night. I was both too upset and riled, and too raveled or would we say, unraveled by the things that I felt I had to do to please too many people. I didn’t, I thought, have the right, or the wherewithal to say No to anyone,  I didn’t know how, I didn’t feel, after I had said “Yes, I will, I would, I can, I should,” to then say, essentially, “F—K off,” and “No, I won’t after all.” Well, of course, to say, “No, I can’t,” is not necessarily to say, “F—k off!” to any one, but I was feeling that way. I felt so angry but also so terribly tired and so overwhelmed and crazed by people demanding of me more than I could cope with and then just that one inch more that I thought I would die…and then, and then…it was basically “F—k you, everyone! I cannot take it anymore. I quit!”

Luckily I didn’t tell anyone that, not exactly, and not in the middle of the night.  I didn’t even call Lee and tell him that I felt overwhelmed and unable to take it any longer.  I cried, yes,. And I wrote emails to people I could scream to, in  despair without jeopardizing our friendships or my freedom…I always have to worry about that! (*Nor did I admit to anyone  — except one pen-friend — that I also feel, frankly, obese, so obese that I want to —but I won’t say it, won’t say it, won’t say it…All I will say is that I hate myself and that I will never again take either the Zyprexa or 30mg of Abilify. If I had known that the additional 15mg of Abilify would make me gain 20 pounds in 6 months I never would have agreed to stay on it after the hospital stay last spring. If I hadn’t taken it after I got out, I would not be in this horrible situation now. No one, least of all the visiting nurse who presses both drugs on me in the name of keeping me sane (hah), seems to understand  how insane it makes me) But I have digressed yet again…

I was speaking of how tired and over-committed I was,  and how I felt that I could not say, “No, I cannot do this, that or the other” to anyone, most especially after I had made a commitment, however unwilling– or even unwittingly. That is not to say that I did not want to do all of what I had to do, only that  I had signed up for too much and now had to draw back and decide what my priorities were. Even those I wanted to do, I had to choose among as well. But I wasn’t calm enough to think this last night, let alone to do such choosing.

Instead, though I had taken my Xyrem, the sleep medicine for narcolepsy that usually zonks me right out, and had taken it early, I tossed and struggled with the green microfiber cushions of my recliner for about an hour, trying to find  a tunnel into sleep, so that I could forget my woes for a while. But it was, as you can imagine, useless, even with the Xyrem. So instead of fighting the green any longer, and tearing holes in it, I turned the lights back on and pulled the lever and sat up again. To my small satisfaction, I discovered that I had in fact slept a  little in my tossing, and that it was 3 a.m. and not just midnight. Good, so I was not going to be up the entire night. At least I could say that I’d slept a few hours…But I was wide awake now. So instead of brooding the more, I decided to…well, there were some poetry contests with December 31 deadlines, so I started the long process of finding poems and making duplicate copies and such to enter those…and it was in doing that, and cleaning the apartment, that the night finally came to an end…

Today, of course, I suffered from extreme sleepiness, until now, when it is nearly midnight, and I am awake again. Go figger.

Seclusion and Restraints: Observations from the other side

Here’s what my friend Josephine knows about what happened in October, having been my designated “contact person”:

 

According to Jo, I was admitted on Wednesday around noon. Apparently the nursing staff called her, as well as Lynnie, as my emergency medical sheet instructs.

 

She comes up to see me that evening, bringing with her some clothing and toiletry items etc. and while she is there she makes it clear to the staff that she is my “caretaker” and is to be told everything so that she can contact my family, when the need arises…(This seems to work, as it turns out, as she will be kept in the loop, thank god.) Anyhow, I am doing relatively fine, though the nurses say I refuse to take the medication the doctor prescribed, which concerns them. Apparently there are plans already being made for a hearing to force me to do so.

 

Before I fast forward to the weekend, when Josephine next sees me. I want to interlace here what I do recall, which is one conversation with the doctor, in his office, during which he tells me that he wants me to take Zyprexa.  “Have you heard of that drug before?” But then memory gets fuzzy, because I am back in bed,  in a bedroom I think is a double, though I am not sure, because I know that for most of my stay it is a single right off the nurses station where they can keep an eye on me, and just as he leaves, I raise up on one arm and scream, “I will NOT take Zyprexa, you F—ing bastard!” Dr Z stops in his tracks, looks back at me, and says, rather mildly, “That’s not very nice.” I finish off with, “Fu– you!” He has heard this before, clearly, turns on his heel and leaves.

 

The next memory I have must occur also before Josephine returns. I am sitting in a room with Dr Z  and someone I think is a judge or a hearing officer. A woman sits on my left, perhaps a patient advocate or a nurse, I do not know.  I recall specifically that Dr Z (whose name I only learn after I am discharged) seems to have spoken to the folks down at N hospital where Dr O practiced because he quotes what I recognize is their Axis II diagnosis, word for word.  This was created specifically for me by Dr O. in addition to paranoid schizophrenia and always struck me as  malarky but was a sore point too, and cruel as it seemed to blame my illness on me. (I had many words with her about it, and I challenged her  to prove it was true. She agreed it did not hold water, since it was only “true” in hospital, and so was just a convenience to satisfy  staff unhappy with my uncontrollable behavior — yes, there too, and equally unremembered!)

 

Nevertheless, it was written in my chart at N hospital and so now it is repeated as if gospel. In addition, the doc decides that he has seen, in two or threee days and five to ten minute interviews with me, “absolutely no evidence of narcolepsy, and no reason to treat for it.” He believes that my sister’s attempts to influence my treatment,  giving him my history of medication responses etc. constitutes improper interference and should not be permitted under any circumstances.

 

After that, I lose all interest in the discussion, knowing it is not going to go in any direction that will be in my interest, that I am being treated by someone who neither knows me nor cares to learn enough to treat me properly. Furthermore, having been taken off all the medications I have come in on (except oddly enough for my Lyme disease antibiotics) as having been “ineffective, by definition, otherwise you would not be here,” I am already feeling drowsy and distant, at a remove from the proceedings and not quite caring what happens. The proceedings come to an end when the hearing officer, or whoever he is rules in favor of the doctor, who wants to force me to take, not Zyprexa but Trilafon, 8 mg BID (twice a day) or Haldol by injection if I refuse. I may object and say I will not do so and will only take the damned Haldol kicking and screaming. Or perhaps I say nothing.  I don’t really know.  I may  only think this, but it is a prescient remark, or thought, in any event.

 

Memory becomes a series of refrigerator-dim flashes. I vaguely recall one incident: literally kicking and screaming while being held down for an injection by any number of security personnel…But even this memory constitutes no more than just an impulse of light on the confrontation, as if I am looking down on my body as I struggle with the guards, no more. Then just blankness.

 

What Joesphine tells me next is that she returns on Saturday, bringing my poetry book. She is appalled at the change in me and asks the nurses, “What happened to Pam?!” I am not merely irascible, she says, but explosive. I am mean and I am violent to the point that I will not let anyone  come near me. If they attempt to I lash out, not just verbally but physically as well, any number of times actually slapping, smacking or in some fashion hitting the nurse of aide trying to take my vital signs or give me medication. She tells me that even when I appear to be deep in thought, sleepy or sedated, I can in an instant rouse myself to fury and explode, launching into a tirade of invective and even physical abuse.

 

At the same time, I am ataxic ( one nurse gives me red  slipper sock to warn staff that I constitute a “risk of falling” but these are soon lost and not replaced) and while I can be wild and have the strength of a rabid animal, at times I have trouble simply getting myself out of a chair. Once, a big security guard, seeing Josephine struggle to help pull me up from the recesses of a deep armchair, comes over to help and I go berserk. Suddenly violent, I take a swing at him, swearing  and screaming at him as if he were the one to have attacked me, rather than the other way around.

 

Once Josephine looked into my bedroom before she was shooed into the day area with me, where all visiting was supposed to take place, she saw that restraints — big leather cuffs — had been placed on my bed. According to her, they were used as frequently as every time I got medication or even every night in order to keep me from — well, I do not know what! But I can only imagine, given how she tells me I behaved. I do know that restraints are only supposed to be used in cases when violence is imminent or uncontrollable by any other means. Now she does assure me that they were, so far as she could see, only two-point restraints, the wrist ones, but that they were actually placed on my regular bed horrifies me, since it implies that they were to be at the ready and expected to be used, i.e. they were not simply an emergency appliance to be acquired from a rarely used, locked cabinet unopened for months at a time.

 

As an aside, I discovered when I arrived home, many just healing scars on my left leg that were not there before I was hospitalized. Yet I also remembered telling a nurse at the hospital that of all the places I had been, their unit was definitely the most safe, the most secure. I felt that it would be most difficult indeed to hurt myself there, as there were very few opportunities and almost no chances were taken…So how can I square that with these scars? I cannot remember when or how I acquired them. I only know that the summaries of my chart mention that I did injure myself, early on, which resulted in four-point restraints at least once (another being the slip-knot episode already described). But with what, and why I have no idea. Probably because of command hallucinations, and self-hatred. But that is only my surmise.

 

I “came to,” I rose to the surface of my insanity only once or twice that I recall, once to see my father sitting by my bed (why was he allowed  to visit in my room?) and Josephine standing there while I screamed something. I remember she abruptly left. After that, the darkness closed over me again.

 

The only other time I surfaced was when they dropped me on the seclusion room linoleum…about which I have written in some detail. But even then, I cannot really remember if it was one whole incident, or two or three amalgamated by a trick of the brain’s confabulatory instinct, and  the passage of time into a single coherent tale.

 

Then there is my journal , which tells a story that in its own way corroborates this one. Usually when I am hospitalized at least in recent years I  keep a detained record of everything going on around me for reasons of paranoia if nothing else. Because of this, I can read back afterwards and understand what I was thinking or doing. This has not always been true, and during some hospitalizations, further back, I was unable to do so,  and thus do not have such a record, but I am glad when I do because it helps me piece together what happened during times that I otherwise experienced later as blanks.

 

However, during the two and half weeks and longer during which I was  literally out of my mind this past October (Josephine insists that I wasn’t “right” even when I got home, and that it took a good two weeks before I was truly myself again)  there is no written record, not in my journal. I wrote a little during the first few days,  going from a self-loathing that speaks of a desire to burn my face (“deface my face and face up to my sins”) mingled with psychotic ramblings to utter confusion. This is almost indecipherable and devolves suddenly on Thursday to nothing at all, represented vividly if accidentally by two blank pages. It is only on briefly on Saturday and then on Sunday, October 18th and Monday the 19th (which may have been only a continuation on Sunday, as I was still confused as to the date and time), which I firmly believe all day is “Monday the 20th,”  that I apparently find the strength and clarity to “steal” a felt marker from OT and then a memo pencil to write with. All writing utensils but crayons have been denied me previous to this, I remember that much, though I also have not been able to, have not wanted to write either or I would have done so even with a crayon.

 

Now, to my pleasure this marker and then the pencil is not  taken from me as too dangerous for me to have in my possession.d I begin to write. I write all day, literally. I write and write, 41 pages in one or two days. I write down everything that happens, and I write as if I know what has been happening, but really without the slightest inkling. It is clear that I have no idea what I have been through, nor what I have been like. I write of a nurse, one I clearly like, telling me I am “doing great” and my consternation at this, because I do not understand why she is telling me how I feel rather than asking me…

 

I write of my impending discharge, and I believe I write about how I don’t remember the last two weeks, but it doesn’t seem to bother me much. What does bother me is why no one on staff will talk to me, why people seem to avoid me, and why one male nurse seems bent on being nasty to me “for no reason.” (I may have made a point of hurting him during my weeks of insanity, that is all I can surmise as a reason for his animosity…).  I am paranoid — at one point I interpret the constant opening and closing of the weekend Dr H’s door, which I can hear from my room near the nursing station, as deliberate torture, intended to “get back at me.” When I finally get a glimpse of Dr H, I scream at him “You think I don’t know what you are doing, but I do, I do!”  He gives me a truly bemused look. I am thrown into confusion, not sure how to read it.  I  remain fairly certain, however, that he is “doing a number on me.”

 

(End of Part 1. I want to reread the rest of what I wrote during my last three days on the unit before discharge — then I will continue with Part 2.)

Pam W – Various photos

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.

Seclusion and Restraints: How it feels

I remember, I remember, well, I remember very little, except in flashes of dim light, like a candle held up by which to read the fading pages of an ancient diary. I remember a sign with my name on it, taped to the door of a room, and how hard it was to find my way back, no matter how many times I made the trip. I remember a nurse with blond hair named “Patty,” whose real name, Lil, I learned only the second to last day I was there. I think I liked her, or that she treated me with kindness, and another nurse named Mary Ellen, who was kinder still, but not always there to save me.

I remember too, but again in uncertain flashes that tell me only that something happened but not exactly what: Being carried by arms and legs into a cold, empty room lined with linoleum, dropped onto my back on the floor, dressed in just two hospital johnnies and pajama pants and locked in there alone. I remember begging for a mattress, then screaming in outrage when I was refused.

This is how it goes: There is nothing in the room but me and air conditioning turned on full bore, though it is October and in the 50s outside. Why do I need johnnies or the huge pajama pants that are falling off me without ties to hold them up? Alone in that room, I take them all off, then squat to pee and take a dump. Good, that feels better. Blankness. Cold, cold. Again I scream for a blanket. Of course, nobody answers. I try to push the johnnies under me to cushion my bones so I can sleep, but the shivers prevent me from relaxing. I have to do something.

I make a long rope of the silky acetate pants then form a slip-knot and put the O over my head with the knot to one side. I pull tight, figuring it won’t take long. I sit to one side of the little window in the door, so no one sees me immediately. Finally they come running. But they don’t understand it is a slip-knot and that pulling at it only tightens it  more. I am struggling for air. A nurse yells for scissors, bandage scissors the only ones available and they cut the pants free. Still, I am in big trouble. I would tell them I only wanted to get their attention, that I just wanted a mattress and a blanket, but what good would that do? Still, do they really think their act of violence, which will follow, will solve anything? Blankness. I have been thrown onto a bed in another seclusion room. As staff and goon squad wrestle my wrists and ankles into padded cuffs, I kick and bite in protest, all of which will be written up as my being “assaultive.” In the end, it is no use.  I scream and scream until the usual injections – 5 mg Haldol and 2 mg Ativan – take the scream out of me and I finally fall asleep.

That should have been the end of it. “Wake up calm and they take you out of restraints.” That’s the name of the game. But this time, I wake and I am still in full 4-points. I ask the nurse why. “Doctor’s orders,” he says. “But that’s punishment!” I answer, shocked. “No,” he says, “restraints are therapeutic. We never use them as punishment.” “Bullshit! Dr Z is punishing me because he doesn’t like me and you know it. He is a sadist.” The nurse doesn’t answer immediately and when he does, he just says, “Go to sleep.”

I remember how they kept me in restraints for 12 hours that time. The chart summary tells me more, that I spent a good part of 5-7 days in seclusion and/or restraints, so there is a lot I do not remember. Am I better off for not knowing? That’s what some people tell me. How would you feel? Would you want to know, or not to know?

————————————————————————————

I realize that the above is simply a restatement of an earlier more detailed post, so it must be obvious that I am still very troubled by what happened. Indeed I am. I am even more troubled by my lack of memory the rest of the three weeks there…which fact was noted even in the summary of my stay, which Dr B (Li) got from the hospital the other day (in lieu of what he requested, which was my entire chart.) Memory loss has dogged me for many many years. Only now can I acknowledge it, and only because Lynnie and others witnessed it. But for so many years I felt desperately  troubled and, well, desperate to hide it, afraid lest anyone know how little I could remember of what happened from day to day. This was especially extreme when I was in hospital but even afterwards it was troubling to me; sometimes I felt I was missing half my life! People — that is to say,  doctors. nurses,aides — expected me to remember ordinary happenings, because they obviously  thought that I was responsible for what I did from one day to the next, which you are not, not in the same way, if your memory is impaired. This expectation was so stringent that I dared not admit how little I did remember of events after they passed. I thought the scant trace they left would somehow prove my evil, prove that I was a shameful deficient person. So  I desperately took cues from others about what they wanted me to “remember,” tried to “pick their brains” about whatever it was that had happened, or that I had presumably done, whatever it was that they expected me to recall. Sometimes a concrete clue might help me piece things together – say for instance if I had scars or wounds that hinted at recent self-injurious behaviors or if there were scribbling on the walls that suggested another sort…But if there were no cues, it was much harder to ferret out what was wrong. Sometimes I might have to come right out and ask, “And you are referring to…?” But I didn’t dare do that often or it would have given my lack of memory away, something I didn’t dare permit…

Now here is the other side of the story, which I find hard to square with my experience in October: one  psychiatric nurse’s account of how situations involving restraints can look to staff.

 

Wonderful Poem at the Merton Institute

Check out the  http://mertoninstitute.org for the source of this, but in the meantime, I think it is not illegal to reprint it here, a marvelous poem, chosen by our friend and hero, Billy Collins, for the 2008 Merton Prize for the Poetry of the Sacred. As I wrote in a letter to a friend about it: I have this secret fondness for formal poems that hide their form beneath enjambments and nonchalance and (perhaps this may sound weird) humility, as I sense this poem does…I really liked it, found it sort of Frost-like, without its insisting on the likeness. Could not find out anything more about the poet, nor any more of his works, except the single sentence that he has indeed published before…Wonder where and what.

The Orb Web
by David Culwell of Columbus, Ohio

One night I stood inside
And, through the fan-shaped window in
The front door, watched a spider spin
A web to snare, in its tried

Way, some of the mesmerized
Moths fluttering in the porch light’s glow
Like bits of paper people throw
At parties or pint-sized

Satellites. The wheel
Of a web hung beneath the right
Corner of the frame, not quite
But nearly setting a seal

Against my going out
Or someone’s coming in. Indeed
A friend was coming soon to read
My hard-spun lines about

Beauty’s fading bloom.
I need to get the broom, I thought.
But I just stood there gazing, caught
By the eight-legged loom:

An inch or so, with gray-
Brown hairs and legs with bands of brown
and yellow, it hung upside down
Laying a sticky ray.

Like a second hand
It circled, moving inward; soon
the web, which seemed a gauzy moon,
Was done, with every strand

Laid necessarily.
The web itself was like designs
On Persian rugs; I read its lines
As living poetry.

A moth flew into it
At three. It fought, wings flickering,
To free itself, but couldn’t spring
Away from the gripping knit.

The spider scuttled there
And nimbly spun the moth in silk
While another of its ilk
Flew into the snare.

The spider hardly knew,
Of course, that something like a gust
Would sweep away its work like dust
And leave no strand in view.

I looked at my watch: the time
Was near. I didn’t lift my gaze,
But walked away, trying to raise
The mettle for the crime.

Academy of Medicine – Poetry Reading for a Bunch of Shrinks?

Wowee zowee, who’da thunk it could go so well? I was more worried than usual and I had this profound dread that — I dunno — somehow disapproval and dislike and even hatred of me would reign overall. Worse, that all those shrinks would find my poetry either cold and incredible (but who are they to say?) or somehow incomprehensible at least in part….This is not just self-loathing baring its usual fangs, but my deep fear that a repeat of my encounter with Dr Z in the Hospital in October would occur, writ large, or with so many others over these past 35 years. Truth is, I am terribly frightened of most doctors, of all sorts, and this despite the fact that I am all too aware, intimately so, of how human, how terribly flawed they can be and how despicably they can sometimes behave. Even so I am aware that I “give” them — give most people — way too much power over me (I have never understood that “give” but it must be true, though it feels like they take it, forcibly), power to dominate and judge and make me feel like shit. Moreover, I am so afraid of them and their power, that I become completely paranoid about — well, any doctor, really any health care professional, from technician to nurse to doctor, I need to see these days! and my mind conjures up scenarios about how they intend to harm me, complete with delusions and hallucinations that  corroborate every such feeling.

Just this past week, for instance, when my migraine, along with vomiting up what looked like coffee grounds, put me at the emergency room again, paranoia completely took over. I still believe that they knew everything I felt and perceived, indeed were doing precisely what I “knew” they were doing …. Why I even call it paranoia I do not know, when I believe it was real. Why? Because, because, because…I have to hope and pray it was paranoia. Otherwise life would be unbearable…unbearable! I would at this point much rather be told, reassured, that nothing happened there, at the ER, and that it was “only” my paranoia, than to find out that indeed I was right all along! No, I hope to god I was wrong! And if I need to be labeled paranoid in order to be wrong, then fine, so be it. Better than to be right and find out that what I was so terrified by really was happening there all along…

But where was I? I was speaking of Wednesday night’s reading. I started out — well, the problem began — I was fine up until that point mind you! — when we entered the building because unlike the hotel, it was vast and echoing which produced an immediate physical disorientation on my part, I felt off balance and dizzied, as if under attack and anxious…I wanted to get out from under those echoes and that vastness…So I was scared simply upon entering the building and wanted to get away from it…This did not abate, and being scared almost to muteness beforehand, it only got worse, esp when Mary left me alone in a big room just off the hall where the reception was taking place. I felt then as if I were going to disappear, to implode, to die, to be killed, if she didn’t come back quickly…I didn’t know how to escape and I knew that I would have to, that I would not survive otherwise and immediately. I slunk to the wall near the door, carrying all my things, my coat and bag and my poetry. Adrenalin shot into my chest and poured down my arms and legs, preparing me for flight, when suddenly Mary returned.

I think she realized what a state I was in then, and felt bad. Which only made me feel worse, and I couldn’t talk for a few minutes.  But I made myself pull myself together and I did calm down, and made it clear that to enter the room where the reading would take plaee once full would be much harder than to do so when it was still in the process of filling. So we went in, Mary going first and fending people off (so I felt) and when I finally had a chair beneath me, I could breathe again. Just knowing I could keep my head down and stop anyone from talking to me, even if they recognized me allowed me to relax, which was what I  needed.

In this room, which had some sort of insulation that baffled the echo in the halls and open space downstairs, the disorientation passed almost at once, and the adrenalin seeped away, until it was only at the level of keeping me alert, not so much alarmed and ready to flee. I no longer felt dizzied or on the verge of hyperventilation or even, as I had, such imbalance as to the possiblity of falling. It was weird  to the max but as soon as I left that room after the event was over, I had trouble immediately, having to negotiate the space with great care, using the banister to take the stairs and even so, feeling my feet and legs uncertainly take the steps downward and feeling the alarmed feeling build up and up the longer we remained. I felt even so that I could not hear properly, though all had left and there were scarcely more than 5 or 6 of us left in the building. I was so glad when we finally got outside I barely registered that noisiness by comparison!

But I am ahead of myself! First the “event” took place.

Barbara from the Foundation that sponsors and indeed is the originator of these humanism and medicine events did a brief introduction about the  Foundation itself, then my publisher got up in her striking bright red coat, and spoke, wildly enthusiastic, about my book. In bombastic terms she praised me endlessly, until I cringed and felt no one, least of J herself could possibly believe such drivel….. I can only hope she tones it down tonight as it was way over the top…upsetting me because I felt certain she was lying to herself and making everyone laugh at me as well. Finally, she was through and gave me the signal to do my thing. Luckily I had more than cut my teeth on public speaking with our book tour for Divided Minds, so I was fine, once I got started. Of course beginning with, How to Read a Poem: Beginner’s Manual, and a few words of explanation, put most people at ease. So you better believe I start with that almost without fail. What else?  And after that my spiel and that poem, I had them…as they say — in my hand. But really, they had me! You see, I was no longer terrified, nor intimidated. Instead I was having fun and wanted only to please.

The rest of the reading went swimmingly, with Mary providing a short intro to each chronological section of the book, and me reading about 3 poems from each, That way, I could let her do some of the organizing of the reading and taking some of the pressure off me, and it eased my tension a bit, even though I guess I could have done it myself, seeing as I had done so at Mystic (though I admit, there I had also started weeping near the end, thinking about Joe as I read a poem about him. In fact, it was probably my crying during that poem there that led Marjorie to suggest I stop at the so-called forgiveness poem, rather than continue through till four o’clock as I was scheduled to.)

In fact, I do not mind crying, it is mostly others who seek to save me from my own tears who mind…They are the ones who cannot take it, who think they have to save me from embarrassing myself, them, and the world. when in fact I don’t mind crying in public, any more than I could care less where I sleep! (I have slept in some pretty weird places, including right in the middle of a labyrinth in a public garden….Could simply not walk a foot farther but collapsed into a heap and slept for a couple of hours, oblivious to the fact of people staring or otherwise wondering what I was doing there, and my family having in disgust moved on…) But at the Academy, I was prevented from crying or at least it never became an issue which at moment, is a source of relief though I do not believe it would ever truly have proved a problem to me.

The following night, I was less articulate, possibly more tired, though I hadn’t felt so, just more tongue-tied, and less quick to think or respond…Nevertheless , the audience was very kind and laughed right on cue, which is more than I can say for the shrinks, kind though they were. and which this audience was not made of particularly. They even responded better, in terms of audible laughter to In Memoriam Memoriae. Laughing at the ending, and esp at the pauses where laughter was most welcome.

Oh, I am such a ham…But in truth this is only on stage, and nowhere else. And only in terms of the truth, not as a true actor, which I cannot be for beans…I dunno how to “act act” and wouldn’t want to. What I think I like to do is be myself, but be a goofy me, or a funny me, which others call, Play acting, but is really just being goofy, and me too. Can I not be goofy sometimes, or might i not achieve that state of innocence where one can play and be irresponsible occasionally? Why must one be staid and unimaginative and awkward and nothing always…

Well, I fear I must stop here, finished or no, as my face is coming off and I simply cannot stay awake longer. I have to go to bed because I am fading and losing touch with whatever i am writing.. When the fingers threaten to fall asleep on the keyboard and the keyboard becomes invisible because you are closing your eyes against your will, you know it’s time to sleep…And so I will, myself, take this body off to bed. Sleep well and good night.

Hospital, Hypomania and How Hope Eventually Returned…

Pretty tame for a seclusion room, but this one is in a school so it has carpeting not linoleum...The thought that little kids are held captive inside is pretty disgusting through.

I wrote in the post below that for three weeks in October I was in Manchester Memorial hospital (a new unit for me. To explain, the hospital you are sent to in this state these days is a total crapshoot. Sometimes the ER can admit you to theirs, but if it is full, as it so often is, they can send you literally to any hospital in the state that has an empty bed.. With the governor having decided to close one of the few state facilities still open and the municipal hospitals so over-utilized that an average stay was 5-7 days only, you can imagine how inadequate any attempts at treatment are. I do not mean to diss the hospital staff in general. Some do mean well and are appalled at what their jobs have devolved into, others however seem not to care that they are no more than warders in double-locked secure psychiatric units where few are admitted truly voluntarily or at least only on an emergency basis and yet no one can stay until healed. Generally speaking, one stays only until such a time as they are either no longer acutely suicidal or no longer a danger to others… That said, I have to be somewhat circumspect about what I say and the judgments I make as I was and tend to be when in any hospital so paranoid that I simply cannot draw any reasoned or reasonable conclusion about the staff or the treatment there, since it is always more or less (and usually more) through the lens of my sense of  personal attack and persecution. In truth, I scarcely remember any of the details or even the gross facts of this particular hospital stay. In fact, I have had to be told second hand, or even third hand, most of what I did there and/or of what happened.

I can say a few things from memory, though, and the picture I posted above is relevant to that: I remember being hauled off to the seclusion room and more than once. (I do not have even the slightest scrap of memory why…which is unnerving, and yet also a relief, as it protects me, possibly, from memories I might not wish to have…I hasten to add however that my lack of memory is not psychological, but neurological: we were warned by my Lyme neurologist that I should not have ECT while I still had CNS Lyme disease as it was likely to produce untoward CNS effects that could not be controlled or predicted. Since then, my short term memory has been particularly affected, among other things (e.g. olfactory hallucinations).  IN other hospitals, the seclusion room usually had a mattress in it, something upon which you could lie down, and were expected to, in fact, since you were given medication and expected to calm down and sleep in general. At other hospitals, I stayed in the seclusion room for an extended period of time, either because I was extremely disruptive (NOTE: see posts about Natchaug Hospital regarding this) or extremely psychotic. At those times I was usually permitted other items in the room, such as magazines and some small personal things to pass the time with…But during the month that is ending, I was literally manhandled into the room and dumped on the floor — hard linoleum — stripped, forced into a johnnie coat (I had to beg for 2), and summarily left behind, the door locked decisively between me and whoever was posted at the observation window.

I remember screaming, I remember begging for a mattress to sleep on, I remember begging for something to cover myself with for warmth or at a minimum for the heat to be turned up as I was thin and it was notoriously cold on that unit, and there was nothing whatsoever in the seclusion room to buffer the air conditioning. No deal. They just told me to be quiet; actually, I do not believe they even said that, but just, No. I do not remember much more than that. In fact, though I have been told the next, I do not actually remember it: there was of course no bathroom facility, and not even a bedpan in the room. Someone told me later that I defecated into a cup…But I do not see how that is more reasonable than that I did so into a bed pan…Why would I have a cup in there  if I did not have a bedpan…No, I believe that in both instances I have been told about, I peed and defecated directly onto the linoleum. If I did so, I cannot explain it. Perhaps I was simply desperate and they did not provide any other mode of relief. Maybe I was angry at them, and did it to “get back at them”? (This was suggested to me as a motive by the person who told me that I was not the first and would not be the last person to do this in that room…which was both a small source of relief, to not be unique, and yet to have done it as a kind of revenge?!  I did not want to believe that I would or could be so primal in my anger…But then, I have done it before, if you recall…

After that — and my memory wants to “see” this, feels it almost can and almost does, but I cannot be sure that it is memory rather than a mere confabulation  after the fact, having been told the bare bones of it by Carolyn (Lynnie) and others, who themselves only heard about it but did not see it either…after that I believe I crossed the room to , hoping there was no slant in the floor that would make the puddle slide towards me, and lay down in a heap and fell asleep.

Or did I? Did I? Or were there consequences to my act? I know that at some point in my “stay” — seems so mild to call the brutality of my hospitalization merely a “stay,” as if at a spa —  I was put into restraints and kept there a very long time. Was it for a separate incident, or was it connected to…Aahhh, wait a minute, yes, I do know, I do know…I remember now…For some reason, and I do not quite remember why, except possibly I was just so sick of everything that was happening, and so…I remember taking off the hospital pajama pants that were way too big for me anyway, and never stayed up and had no ties to pull around my waist and so were useless. I pulled them off and wound them into a narrow rope, which was easy as they were made of very thin material, then I formed them into a kind of slipknot,  fitted it over my head and around my neck and pulled on the  one end that had to be pulled for the knot to tighten, holding the other  like a kind of ballast (I don’t remember entirely how I did this only that it felt dreamlike, how easy it was to accomplish). I have forgotten what I was thinking, if I thought at all. Probably I did not think, I was that far beyond any rational thinking, even beyond any rational “wanting” in the sense of really wanting to die or not.

In any event, it seemed to take a long while before anyone noticed, and then a whole crowd of people were suddenly upon me, and they didn’t seem to know how to get the noose off  or how to loosen it. I held the end that slipped tightly in my fist, having no desire to relinquish it, though at the same time having I suspect no real desire to die either, that they could not easily free it. I heard someone yell to cut the knot. I remember thinking that was silly, why didn’t they just untie it? But it seemed that that was not possible, or at least that it was taking too long.  Then there was a pair of scissor up at my throat where the knot was — it seemed that  only bandage scissors could be found and those were not easily accessed — and someone was ripping at it, and then it was torn away and my neck was freed.

Stop. I have to stop here. Memory now fails me. I can only speculate what happened after that, because it literally blurs into nothingness. Goes blank. Goes back into the vault wherever all my lost memories go, perhaps never to be retrieved, if never fully or adequately formed. All I can do is try to reconstruct what might have happened next. I am pretty certain that it was after this that I was put in restraints. It would make sense. After all, what else could they do, and what would make sense? If I wasn’t safe in a seclusion room, in a hospital that in fact DID resort  to seclusion and restraints, it seems only likely that restraints would be the next measure taken. So I have to assume that it was for that reason I was put in four point restraints. Also, since the doctor I had been assigned to, thought a sadist by many on the unit, was  also the director of it, it was likely his call that led me to being kept there for more than 12 hours, and maybe as many as 18…I honestly have no idea in the end how long he kept me in such a fashion, only that I was not released even after I had fallen asleep…

That is almost the sum total of what I can, as a kind of “hard copy” memory, remember on my own. As you can see, even with those few memories, I had trouble and some help in recalling them.  I have some vague sense that a great deal went on during those 2 and a half weeks when I was largely insensible to what I did (at least to the extent that I did not recall it from moment to moment). During the last half week when I finally cracked the paranoia that kept me imprisoned, my memory did not improve, only my temper and the distance I kept from and my anger towards those who I had earlier felt were working in cahoots to hurt me. My impression then was only that some people were angry with me, but I did not know why, that some people resented me…But I could not figure out why. The ones who seemed to brighten when I smiled and help nothing against me told me gently a little about what I had done or how angry etc I had been, but only vaguely. They did not seem to understand that I had literally no memory of the previous 2 and a half weeks, or if they did, they did not seem to want to refresh my memories, perhaps feeling that it would be unkind, I dunno.  In any event, I learned a little about the “Pam” that some thought they knew, or that some people thought they had met and known for those 18 days…and that others had believed was in there all along and were now  glad to see emerging…But it was very confusing. And in all that confusion, I also had to deal with the fact that the new doc who had taken over after the sadist doc was removed from my “case” thanks to Lynnie’s intervention,  had decided that his philosophy of short hospitalizations would take precedence over whether or not I was fit for discharge, and so I was to leave on Tuesday…I had no choice, and so as I prepared to leave, I also had to “prepare a face to meet the faces that you meet.” (a quote from “The Love song of J Alfred Prufrock” by TS Eliot). But I was also growing more and more revved, more and more anxious. and I had no one I trusted enough to talk about it with. I certainly could not tell the day nurse. (I don’t think I did, but I do not actually recall one way or another). I knew she disliked me intensely, for all that she tried to pretend otherwise.

In the end, I did leave that Tuesday, though even as I got into Josephine’s car and she pulled out into traffic, she told me I didn’t seem right to her, that she didn’t think I was well or ready to leave. That fact seemed clear to almost everyone I saw that day. And not long after that I grew so talkative and revved that no one could get a word in edgewise…This was so emphatically not like me that thank heavens everyone put up with me, and no one, NO ONE, rejected me or gave up on me for it. I do not remember anyone being cruel or saying, GO away, you talk too much, or you are being too egocentric etc. I recall in fact only kindness and some humor injected into the situation, but mostly kindness. They all, my friends, as well as Elissa, the RN, seemed concerned as I rocketed higher, and yet seemed to feel uncomfortable and not at all happy with how fast I was speeding. Sure, Dr B diagnosed it a hypomania, but I  had thought hypomania was an enjoyable state, not this unpleasant adrenalinized racy state that felt so terrible to me. I hadn’t taken Ritalin in 3 weeks, but I didn’t even want to now. No, taking stimulants for Narcolepsy was nothing like this. This felt terrible and  neither Ritalin nor even Adderal had ever felt so terrible. There was no pleasure or even alertness that made me want to do things and study and write involved now. I got a little more cleaning done, true, but only because I was trying to exercise off anxiety, not because I had pleasureable energy. In fact, had I been able to slow down, I would have gone to bed to sleep it off!

Eventually, Dr B upped the Topomax and I think we had already increased the Lamictal and eventually over the course of the next week, I came down to my usual state of semi-sleepiness and was able to restart the Ritalin (after some discussion about why I take it…He is still new to the situation and my narcolepsy)

Well, that is about all I can tell you about the hospitalization just passed. But there was more to it, and what I know about it, though the facts are vague, is that there was something massively wrong…It felt like the Y2K meltdown in some ways, esp in my lack of contact with — reality, memory? Is there a difference? I feel that this was very different from my usual post-lyme hospitalizations, that I was in a different state, and so did others. It frightened me more, and it was more violent. Certainly the treatments were more violent, but that also implies that I was too. Lynnie keeps telling me she will talk to me about it. But so far, she has not… Do I really want her to?

Disorderly Vision Produces Disorderly But Productive Thinking? (Or am I just Imagining Things?)

Glasses, glasses, glasses, but none to help me see through the confusion of dancing and doubling of sites, scenes and texts!You would think that one of the many different pairs of glasses, with some specialized  lenses or prisms or bi-focal, or tri-focal or something would help me see through the confusion as I state it in the title above of “dancing and doubling” of images and scenes and texts, oh, especially text, both on-line and hard copy…Or perhaps it simply matters more to me that I cannot read, especially because in two weeks or so I have three or four readings coming up in the space of one week and I fear that I will not be able to simply see my poems on the page. If that should occur, and I do not manage to have each and every poem by heart, what will I do?  It so happens that Dr O, or Mary will be at two of the readings, so I can alert her to the problem and ask her to be prepared to (hmmm?) take over for me, at least until it seems that I might be able to resume — though why I could resume I don’t know, since the problem simply recurs immediately and it is only my ability to cope that matters, and by coping I mean my ability to navigate a page of text that has literally gone wild on me, with one line rising up upon another, obliterating it or merging with it, or most commonly simply interspersing with it so I cannot quite make out either one separately and can only try to peer at the paper sidewise as if that could help me parse them out. It of course does nothing, and the words do not separate themselves into readable lines. No, more likely, the words themselves interact and disperse into bits of words or letters, which themselves dance and double and shimmer.

Oh, it feels hopeless to discuss the matter of vision and what to do about it should I have trouble two weeks from now. So much could happen in those 14 days that nothing is predictable. For instance, I am managing to write this now, without a great deal of tortuous movement and agonizing, though not without trouble — so at this very moment, I could see myself getting through a poetry reading without surrendering to virtual blindness — at this hour of, hmm, at 1AM is it morning or nighttime? Well, I slept from 7:30PM until 11:30PM...Half the night, enough to “take the edge off” my sleepiness. At 11:30 then, for the first time all day,  I took a Ritalin, though I had gotten through from 6:30AM -7:30PM of the previous day without any (why? just to prove I could, but without accomplishing anything too). So why now, at 11:30PM? Why in the middle of the night, which to most people would seem the least logical time?

Why? Because I wanted these hours, my time, to be productive, and for that I had to be truly awake and alert, not merely marginally so. (My touchstone of true alertness for years has been how interested I feel…I now know that in my natural state I am never bored, so when I feel a sudden lack of interest in my usual pursuits, that’s when I know I’m getting sleepy. There is no earthly reason why I should have suddenly lost my ordinary passion or fascination, no reason, except that I have become sleepy and sleepiness persents itself as a lack of focus and interest, i.e. as boredom. I am not really bored, I mean only that as a younger person I associated boredom with sleepiness and so whenever I fell asleep doing something I thought I liked, I took that an as indication that I “didn’t really enjoy it after all,” that obviously it bored me. Otherwise, why else would it make me fall sleep? Despite my initial feelings of interest, I evaluated each choice against the proof positive of my falling asleep (which happened whenever I did anything sedentary, including studying), “proof” that I was — the greater truth — bored by it, “proof” that as John Berryman’s poem about “liking valliant fine art” suggests, I had few “internal resources.” Each time I went in for something I thought might spark an interest or fascinate me, as indeed the initial consideration of it did (I cannot give only a few examples, because even just starting in college the choices overwhelmed me, like a penny candy display before a child who has only five pennies to spend. Likewise, there were too many courses and directions I wanted (passionately) to explore, rather than too few. And I could see myself enjoying every one of them, from philosophy to geology!

That was true for me the unexperienced but so far as I knew or thought about it, alert freshman. I still believed that my falling asleep at the movies and during classical music concerts and even simply listening to music I couldn’t sing along with, or in classes where I was not allowed to knit while I listened to the teacher…

For me the senior, there was no longer any penny candy in the display, only a few largely indigestible rounds of “hard tack” that were the very few requirements my “major” required for graduation. I’d actually chosen my major (“Ancient and Medieval Culture” because of its very few requirements and because I’d already fulfilled most of them without meaning to. But the fact that I graduated at all in 1975, that remains a mystery. I had only 27 Brown credits, with a 28th I was fighting for for Spanish taken at the Yale Summer Language Institute, which Brown had warned me in advance it would not grant credit…no matter how well I did. This was their policy, and since Brown only required 28 credits, one credit per full course, rather than most schools bare minimum of 32 or 36,  they felt they had a right to insist upon all 28 credits all coming from Brown. I don’t want to go into this here, but I did graduate, and I do not know how or what happened, only that a friend called me after my advisor told her to, and while I had no cap or gown and did not attend, I recieved a diploma, Phi Beta Kappa and my advisor’s encouragment (so much for how well he knew me) in my new life as a pre-med student…More sedentary than ever, more proof I was bored, and more ambivalence about what I had chosen for my lifetime career…

But for the most poignant example, because for me the most painful, take that for years, in fact for as long as I remained an active, if amateur, field botanist  (from age 19 until age 39 or even 49 or so, when Lyme disease laid me low), I assumed that while I was devoted, enthusiastic and extremely, even uncannily talented, someone who could recognize and spot a plant I’d never seen before and know everything there was to know about it that one could possibly learn from a glimpse at a guide book, then later a taxonomy chart, and any brief, say 2-page, description as to its medicinal or gustatory uses. Yet I also “knew” that I could never learn plant physiology, or anything technical o biological within plants, such as  genetics (important if I want to explore taxonomy) or biochemisrry (important for just about everything else). I knew this was true largely because they “so bored me, they put me right to sleep.” And so, despite an IQ of around 165, so I’d been told, I felt I could not study botany more deeply than the literal surface of plants, because  it would put me to sleep…i.e. I was so inadequate in my internal resources that a deeper pursuit of understanding bored me to sleep…

Can you can imagine how I felt, coming to self-understanding of such a dismal sort? And believe me, I was devoted to honesty, at least about myself, to myself.

But I have strayed widely, and perhaps have so diverged from my inital topic, which I vaguely recall started with an image of glasses, as to have rendered it irelevant… Hah! But let me see if I can wend my way back. My discussion of glasses no doubt was in reference to whether or not I could successfully accomplish the poetry readings coming up in 2 or 3 weeks. Which somehow lead to a discussion of my being up at — well, it is now nearly 3AM, so I am awake and alert, having taken Ritalin 2+ hours ago, and I do not feel I have mis-used it, writing this. A discussion of being up and taking the Ritalin, no doubt. Taking the Ritalin… and  (althought what follows seems relevant, it was in fact written earlier than all that precedes it) –>

feeling for the first time all day (meaning the entire 24 hour cycle), during the hours when I usually am the most alert and productive, I could not bear wasting time, not even in service of proving to Li that I could in fact forgo Ritalin. (Sure, I am able to do without it, I am not addicted to it I can prove that, if necessary (though to combine doing without it, along with taking Zyprexa is  singularly cruel and unusal punishment. The Zyprexa is incredibly sedating for me, so I could never use the intellectual powers it endows me with, simply because I am too sleepy taking it (this has ALWAYS been the problem, and was one reason why Dr O always increased the Ritalin when I took Zyprexa, rather than attempted to decrease it. Another thing that Li does not understand was that Dr O never decreased my Ritalin or made any effort pro forma to do so. For me it was simply one medicine in her armamentarium, and if it worked the best, so be it. She was not even averse to giving me Adderal when and if I told her I wanted to try it. She was completely agreeable to anything I needed in the battle for alertness, and never once accused me to abusing drugs or worse absusing her willingness to prescribe for me. In point of fact, she was right. Why should she accuse me of anything, when all I wanted was what she wanted? As much alertness and “on” time as possible, within the limits imposed by my narcolepsy coupled with the super-sedating effects of Zyprexa. It was because of her absolute trust in me that I felt I could trust her, i.e. trust that if we lowered the Ritalin dose when I did not need it that would not preclude raising it again, if I needed it again.  Because of that trust, I could tell her when I no longer needed the dose she was giving me and it was in that fashion that we cut it down from a high of some Adderal plus both ER and regular Ritalin five times a day — this was when I was taking some 35mg of Zyprexa — to only 20 mg of regular Ritalin PRN, of which I rarely take all 5 pills. And she was right, I never got addicted…In point of fact, I was not even habituated, as we discovered as I went on cutting back and back.

One thing Dr O always understood was my need to feel secure in terms of this medication, not to feel that I was ever in danger of its being taken away from me because a new doctor had decided I was either addicted or for the umpteenth time and without proof decided I didn’t have narcolepsy. I do not know how to convince anyone but Li at a minimum ought to listen to the taped Voice of Narcolepsy at the New York Times Health section…These patients speak well on behalf of those ordinary people with my condition, Narcolepsy without Cataplexy. So many docs are unwilling to grasp the notion that many many people suffer — and suffering it truly is — from TRUE narcolepsy, even though we do not have cataplexy. Despite the numbers cited, I myself believe that the reverse is true, that N without C is far more prevalent than N with C…And that better tests, shorter and more discriminating diagnostic tests than long stays at a sleep center will find that Narcolepsy is more comon than people ever thought. (Every time I tell someone I have narcolepsy, they tell me of a ceertain person in their family who falls asleep “just like that”…but was never taken to a sleep specialist etc). Few people and fewer doctors are aware that the falling asleep with one’s face falling into a plate of spaghetti is just a myth, and that narcolepsy has many different faces, just as anxiety, or ADHD or schizphrenia does…Why so many seem satisfied with that myth, and do not question it is beyond me, but they don’t, or it is the rare internist or primary care doc who bothers to question the received wisdom that questions the patient’s motives in asking for Ritalin, rather than the doctor’s compassion in failing to  so much as take a sleep history or approach the patient with an open mind…

Dr O knew that I had for way too long been treated as a drug addict when in fact I needed the precise medication other docs considered merely placative. She refused to go that route, and never made it an issue. Even in the hospital, every hospital I went to, she was able to persuade them to give it to me…It was only Li who was not committed to my taking it, disbelieving perhaps that I have narcolepsy (again, again! Why must I put up with this? Is it worth it, or should I go elsewhere, perhaps to a sleep medicine clinic to handle my Ritalin instead of trusting Li to do so…because clearly he cannot be trusted to believe me, to believe Dr O, to believe anything, or even to want to find out!). Why now, when I could have/should have (except that I have spent all the day in a kind of avoidant daze) gone back to sleep, if necessary by taking a dose of Xyrem, as prescribed, why did I take Ritalin at 1AM and stay up writing especially since Li is trying to “wean” me off the Ritalin?

WHY indeed? Why the f–king hell is he trying to “wean me off the Ritalin in the first place, when it was helping me function so well that most people had no idea I had a disability at all? Why question my meds when they are working so well? I’d say to anyone who wants to then interfere, merely for the sake of not using a “potentially addictive drug,” for Chtist’s sake, don’t break what is nicely repaired already. It doesn’t seem necessary, given how well things were going in general. And when they fell apart, I told everyone and him what was wrong: the ABs needed to be changed. I have said that again and again, ever since the hospitalization in February, but nobody is listening to me. I told Dr L then and there that the Bicillin and the Minocycline was not a good combination, that for some reason the two ABs were inadequately treating the three toughstone symptoms, cardinal symptoms in my case, in the sense that if they are taken care of, I seem to be safe from a relapse, but if they are still present, I am not. In point of fact, every single time one of these three symptoms appears or fails to disappear, I eventually wind up in the hospital, either in the spring or in the fall, without fail! (Did I make it through this past spring, or was that when I was in St F/Mt S and trying to tell them that the Minocycline/Bicillin was not aduquate even then? I’d have to look back to see…)

Anyhow, stopping the Ritalin may seem to be fixing something that wasn’t broken, but instead is rather to be breaking something that was functioning extraordinarily well…I mean, if I was writing and doing art and relatively happy and content, why ruin that by stopping one of my essential medications as an outpatient, just because the in-patient docs thought I ought not to take it there? I think Li is in fact trying to stop it for just that reason, because it seemed to be unnecessary inside the hospital, just because there, under those hothouse conditions, having no requirements but sleep, I “did okay.” But doing okay “inside” which is to say, within the protective walls and given the constraints (to say “constraints” is barely a euphemism) of that  sort of an institution is scarcely the same as to do okay or even well outside those walls. I didn’t need to stay awake there, or do anything there, and in fact could sleep at will. And so I did, much of the day in fact, every day! If I then needed to sleep at night, well, I could ask for “something for anxiety” anytime, though in point of fact, I mostly could sleep then too. Much of the three week stay was spent sleeping, and when I did not, I was so paranoid that sheer fear and that adrenalin rush kept me going. Near the end of my stay, I became somewhat manic, hypomanic clinically as Li diagnosed it when he saw me. I couldn’t shut up and my speech was — and I felt this as well — pressured. That is a very good word for it, indeed. There was an internal feeling of pressure to get words out in a rush, an unpleasant need to say things, as if they had especial importance and absolutely had to be expressed, even though if I thought about their content, which of course I could not really do in such a state, there was in fact nothing particularly urgent to them.

Well, I am getting tire finally of writing here, and yet I have not finished. I quickly then let me summarize. Because of this recent pressure of speech, coupled with some manic energy put into actually cleaning up this place, and getting more painting and such done, though still hypo manic not truly manic, Li felt something ought to be done to “bring me down” — I am not quoting him so much as quoting the idea…Anyhow, first he suggested stopping the Ritalin, which was okay temporarily, since I already felt enough adrenalin and did not want to add more to my own felt pressure of speech and heart beat. But I had and have no intention of this being anything but temporary…Then he wanted to increase the Topomax, which he said would also decrease the pressure and help hypomania, at the same time that it might help any appetite increase that came with our adding back some Zyprexa, which in his opinion, and of course Elissa the RN’s insistence, was the best drug for me…So far they have only gotten to 2.5mg but even Li has suggested 5mg if I will agree.  Now that I have summarized the pharmacological plans for me (including with this, the ultimate decreasing to 0 of my Ritalin) Let me say right here and now, that I will not stand for a rigid “fixing” of the Ritalin problem…

Below I have summarized a few absolute requirements for a psychiatrist, if I am to trust him or her, or continue to see him or her:

One requirement of any psychiatrist I see is that he agree the Ritalin is a necessary medication for an illness, which is narcolepsy, with which I was diagnosed by a sleep specialist at the Sleep Disorders Center at Norwalk Hospital (records available) and it needs to be understood between us that he will not in the middle of therapy decide suddenly to meddle with it (unless I agree and do so not under duress, or decide myself not to take it); it needs to be understood absolutely and without any fishiness or unspoken mistrust, that I am NOT a drug seeker, and that I have narcolepsy, a genuine neurological disease, which needs to be treated, independently of any other illness I might suffer from, so that my being given Ritalin is not dependent on whether or not I agree to take any other drug like Zyprexa etc. though taking Zyprexa might in fact influence the dosage of Ritalin needed.The Rx needs to be permanent as well as flexible according to my needs, which may increase as well as decrease as the ilness waxes, wanes and responds to other drugs and illnesses. Ritalin, however, is never to be used as some sort of bargaining chip…

Argh, Icannot write another word, and in fact, I feel as if I am giving up on a personal letter I was writing to a specific someone. If you are that he or she, you know who you are…I do not!

Rest assured, or at least rest. If I made too many typos and other errors of eloquence or diction, I shall clean them up tomorrow, so reread this then, if you read this today…Be forewarned, it will change between the two times.

 

Added on Oct 31.

 

I have decided not to redact the above, but to leave it as is, with all its typos and lacunae and infelicities of grammar and thought. I was writing spontaneously, as I believe was evident enough and I don’t see why that is not adequate for a post once in a while. I would just like to add a clarifying detail or two. What I think I forgot to explain was that between the post on Zyprexa/cancer treatment I experienced a three week hospitalization, which happened very suddenly, though of course, as I mentioned, my visiting nurse had been alert to the possibility of it, even perhaps the inevitability, for at least two weeks…If you understand that, some of this discussion and the one to come above, will seem a little more undersandable.

 

I will now go to a new post and continue there.

Can Anti-psychotic Drugs Treat Cancer?

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


Article URL: http://www.medicalnewstoday.com/articles/160600.php

Main News Category: Schizophrenia

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


Mary Neal Tells Her Story

I am going to try to embed the youtube videos of Mary Neal telling the story of what happened to her severely mentally ill (but non-violent) brother Larry M Neal in Shelby County Jail, TN, but I am not sure if it will embed or not. Here goes nothing! Ah! It did work, So the top one is first and the second one is last. PLEASE WATCH. and then go to the website mentioned in the post below this one and see more details of what is going on. This never ought to happen in the United States, it is evil, but it does, and it happens far too often. I think Johnnie Cochran would turn over in his grave if he knew what had happened to and within his firm after his death…

Thanks, everyone!

Incarcerated and Mentally Ill: Larry Neal’s Story

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

Vision Therapy, Art and Wonder

The following may repeat some of what I have written before, though expressed rather differently. I “purloined” it from a letter I wrote to someone I once knew, who I hope will forgive me if he ever visits this blog and recognizes it here.

____________________________

Life continues to present many challenges, which both the poetry book and Mary’s introduction to WE MAD CLIMB SHAKY LADDERS illuminate , I suppose, in some detail. But among the thrills and wonders of these last few years of recovery are two that are related to one another but which I would never have dreamed of in relation to me.

I speak of vision, one — of depth perception —  and two, of art. I don’t know if you have heard of the recent science memoir by Sue Barry called, Fixing My Gaze, in which she describes her strabismus  and her work in vision therapy. Apparently the book has become quite popular, at least around here, after a review in the Hartford Courant (Barry lives not far from Northampton, MA). Strangely enough, I have been writing for the past year about, among other things, my own experience in vision therapy trying to achieve stereopsis .  I believe I must have had “3-D vision” at some point, since I did not have strabismus as a child. At least not to the same extent as Barry, and I think I did when very young “see” what others said they saw through those Viewmaster toys (you must remember those binocular viewers with the “3-D” slides?). My later lack of 3-D vision never bothered me, apparently, and I never knew that I was missing anything, until I developed frank double vision about four or five years ago. My optometrist told me I probably had had unrecognized intermittent exotropia since childhood, but that my eye muscles had been somewhat stronger then and so my vision had stayed single. She could not say however if it had indeed been binocular, that is to say that I had used both eyes in seeing.. In any event, it was only when I was given prism glasses in 2008 and in February suddenly experienced brief, brief flashes of stereopsis that I understood what most people see, what I had in  fact  gone for so long without seeing. The world was suddenly, achingly more beautiful than — well, than anyone else seemed to recognize:

The first time on the Broad Street Green I passed the huge tree with its bark “sticking out” I was stunned, stopping dead in my tracks to stare at the reddish burnt sienna ridges that had suddenly leapt out at me. Stark, knifelike and jagged, the crusty surface was backlit by an early setting sun in such a way that  it all seemed limned with light. A gentle roughness edged the troughs and depressions. Spawned from the cortex wood, the bark strained and stretched. I could scarcely believe how the air gently touched and tasted each indentation and projection of bark — as if saying, “I love you, I love every inch of you and my kisses, my airy bearhug proves it.” Just as surely as I knew the air loved that bark, I knew that space, the “emptiness” that cups and holds everything in its place safely,  adores matter. This struck me as neither bizarre nor even uncommon, only obvious. What was strange and unfortunate to me was the fact that no one I spoke to about this experience seemed to know what I was talking about…

I cannot tell you (or anyone else for that matter, except perhaps Sue Barry, or Oliver Sacks) how much “space loves us” and everything it touches. Space is what gives us as a gift to ourselves..And when I saw it, saw space for the first time I fell in love with matter, and with the hollows and shapeliness of everything. I wanted to do nothing but gaze upon the world without touching it or or talking for at least a week…I wanted to walk around in silent solitude, experiencing space without interruption, to see without the interposing of frivolous conversation how incredible it was that you write words with pens held above the paper; that when you see a sign or a billboard, there is — and you are as certain of this as of any delusion —the knowledge that there is  flatness to it, and that “more space” lies beyond it…Someone’s nose which reaches out in space is far more interesting than their voice, and the way a hand extends outward can be the most lovely thing seen…Indeed, I would tell people quite spontaneously how beautiful they looked, the way their noses projected from their faces, or their hands suddenly coming out at me…

Oh, it is so impossible to convey the sheer — well, even now there are no words for this, no words beyond that single inadequate word, beauty, for which there seems to be no useful synonym. All I can say is that while I felt no better about myself, I certainly fell in love with the substance of the world! Who can say, What is the matter with the world? Seriously? All is the world is the matter, and that matter is more exquisitely lovely and worthy of being preserved than even many principles — Free trade, capitalism, rugged individualism above socialism in any and all forms etc —  Americans feel they have  a right to hold so dear…
As for Art? In my cooler moments I reduce it to “medicine”, to symptomatology…thinking perhaps this amazing talent, so unexpected and newfound, has merely to do with the Temporal Lobe Epilepsy or seizure disorder with which I was diagnosed after having ECT about 3-5 years ago. I don’t know. (I read in SEIZED by Eve La Plante that not only are there personality changes but one can acquire sudden artistic abilities and interests, almost full-blown after developing TLE..so who knows?) Perhaps not. In any event, (I should mention that this is my theory little mentioned to anyone at all…Not sure to whom I should talk…) starting in 2007 I took up lifesize papier mache sculpture in a serious way, and just a week ago suddenly, VERY suddenly, discovered that I could paint portraits, just like that…I had never done a portrait before, rarely even tried to draw, had always said I couldn’t draw or paint for beans. Then one instant I felt drawn to paint (with which I had always decorated my papier mache, with swirls and colors but not true representational painting) and to doing “real art”. I “decided” I would paint a young man, and then went ahead and fearlessly did so (see first attachment)…Since then I have done one portrait a day. Some imaginary, some from photos…And I have no idea, had no idea I could do so at all! Frankly, ditto the sculpture, though I am getting used to that ability now that I have several to my name…(see two other attachments for examples of earliest pieces).
I hope you won’t mind all this “Wow is me” stuff…I’m not usually so impressed with myself, I assure you. However, while I am at it, I want to send you three newer poems. I actually dislike most of the illness poems in the book, and want you to see what I have been doing more recently,  since the DIVIDED MINDS book was finished in 2003. I hope these poems speak for themselves. The “Epithalamion” one got a lot of chuckles, and ought to, when read properly (best out loud). I read it at my twin’s wedding. “To the Reader” will be the first poem in my second book, the opener, though perhaps not as “welcoming” as “How to read a Poem”.  And the vision therapy one is about what I have been doing in order to regain stereopsis. Which by the way really works, vision therapy that is, despite the skepticism of most ophthalmologists, who never bother to try it out, just condemn and contemn it out of hand, because it is done by ODs not MDs….VT has to be continually practiced though or like me you can lose the ground you gained after a while. Now I struggle to gain it back. I vow to  keep practicing. I do not think I can go without the exercises not after having gotten my eyes to do what they should do. It is so discouraging now to be back at nearly square one, I must admit…

Compulsive Eating and Zyprexa (updated)

ALL EYES ARE UPON US
ALL EYES ARE UPON US

This is my ALL EYES ARE UPON US papier mache sculpture head — It should easily be finished by the time I am having a poetry reading and exhibit in Mystic on November 15th. I would like to exhibit it with the others if possible. It is the newest of my work and therefore the one I am most proud of. I am not completely clear just where I am going with it, but I do know not to worry, that inspiration will come to me eventually. Indeed, some already has; I am starting to place a tri-folded American flag underneath her ( yes it is a woman…) arms, as if she is hugging it for dear life…Why? not sure, but I believe my subconscious has a message for me there…I will decipher it and rest of it later, when I am through. However, my thoghts on the “meaning” is never the last word on it. I expect my viewers to do the same, that is, interpret the sculpture according to their own lights, according to the vicissitudes, or the longstanding truths of their own lives, not mine. It should mean whatever they want it to mean, according to their own life experiences. All of which is to say, There is no right answer, no real meaning here, only the sculpture’s evocative power to suggest this to one person and that to another.

Now regarding this post’s title, Compulsive Eating and Zyprexa: I had a rough week two weeks ago, during which I did something self-destructive though along too familiar lines with a “fagot” of cigarettes tied together with thread and simultaneously lighted. There was talk of the hospital to “keep me safe” if nothing else, but I saw no point, and indeed there was none. No hospital had ever proven they coud truly keep me safe: I have attempted and successfully hurt myself sometimes seriously almost everywhere I’ve been sent to, including breaking a carefully supervised mirror in a make-up compact and slicing my wrist open. My visitng nurse knew and agreed but made me agree to take a PRN of Zyprexa for a while. I didn’t really fight this. As  you, Readers, know, Zyprexa is a drug abut which I am extraordinarily ambivalent. It is both the single most helpful and effective drug I have ever taken, nearly a miracle medication, if not precisely that, but also the absolute pits in terms of a side effect I hate more than any.  I have not yet figured out how to tolerate this love/hate relationship I have with the drug. For instance, despite hating the single worst side effect, I very much appreciate being able to read, read, read, to concentrate and pay attention and remember..

Oh, perhaps it feels subtle the effect that Zyprexa produces, the therapeutic one, the helpful effect . In actuality, though, the change in my behavior is immense, not to mention on some very fundamental thought patterns. I don’t actually recognize at first that all of it is drug-induced: I just sit down and decide to pick up a book — that all by itself is unusual for all that it feels natural. But so too is the astonishing fact that I feel interested instead of listless and fearful that I won’t “get” it, that I wont be able to attend,  and upon opening the book, the fact that every word seems to flow,  my mind fluid and absorbent and the words just pour, the words and the sense and the meaning, well, if I weren’t so absorbed in it, I would be amazed… But I think, Why haven’t I read before now? Why,  when it is so easy, have I not been doing this all along? ( I have forgotten that it was NOT this easy until I took the Zyprexa…). But the difference between then — not reading, and now — being able to attend and absorb and read — is not subtle at all. It is marked and significant. I finish books and articles, instead of merely dabbling in them. And I remember what I read, instead of most of the content flying in one ear and out the other.

But the same effect that brings about the therapeutic effect, unfortunately and seemingly by the same mechanism, induces the unwanted and horrid side effect of an insatiable appetite. Just as subtle and my being able to read, I scarcely notice at first that i want to eat more than usual. I simply feel increased desire for food, and think nothing of it, since wanting food is normal, right? It is only when I recognize, when I realize that it is constant, and occurs immediately after I have just finished a full dinner plate that I  begin to associate it to the new medication. My weight quicky increases, but because the food desire feels like me, as if it is simply native to me, I cannot justify it as purely drug induced, but am ashamed of my new lack of self-discipline and my also new tendency to compulsive overeating. Even when I know for certain it is all “chemistry” –and begin to tie ALL obesity therefore to chemistry to the effect of body chemistry that is out of whack, either congenitally or induced by the environment, perhaps by  igesting the wrong foods themselves. What if eating high fructose corn syrup, already associated (the reasons are still unclear) with obesity, changes one’s chemistry to produce a malignant positive feedback that only induces more obesity ad infinitum as long as one continues ingesting it? Even when I know for certain that my increased and uncontrollable appetite is pure “chemistry” it doesn’t fully relieve either my shame or my latent anger at what ‘I have done to myself.”

I have been off Zyprexa for many months now, and have rarely needed or taken a PRN, but thought it makes a noticeable and positive difference, it is the already evident weight gain I cannot/WILL not tolerate  (Truth is, it showed no sign of ending even at 160 pounds the last time I took it). My friend Joe who has taken it for years developed another very common “side effect” of this drug, diabetes, on top of ALS… So I am between the Scylla of “negative” and/or cognitive symptoms — poor concentration and inability to pay attention, the lack of a certain spark in my life AND Charybdis  — the whirlpool of an uncontrollable urge to eat up everything in my refrigerator right after I have already had a full meal, the wild animal panic if I cannot, and the lack of concentration induced in its place because all my mind can focus on is “What can I eat now???” It is a panic I feel in my hands, especially along the backs of them, more than anywhere. I certainly do not eat out of even imagined hunger. I know that. I feel FULL, in most cases because when I am hungry I usually will eat sensibly… But when smitten by the drug-induced food-seeking behavior after a  full meal, I can even tell myself out loud, “You aren’t hungry, you don’t need to eat”…this piece of bread, or cheese, or fruit, whatever is in my hand. I listen too, I put the food back at once, and wash my hands, and go back to the living room to read or do my art or whatever I was occupied in doing before I was seized by this compulsion. But literally no more than 10 or 20 seconds later, another food impulse will propel me from my seat to the refrigerator, and if not consciously thwarted I will eat. And eat, and eat. Not like a bulimic, mind you. No, I take one piece of fruit or bread or cheese (I did not last as a vegan, alas, because I felt sick and dizzy living on fruit and green and colored veggies) and a knife and a plate, and sit in a chair, and cut it up and eat it reasonably slowly while I read. But soon I am finished and ready to read again “solo.” That is when the tension starts building to another threshold over which I feel it is impossible to climb in safety.

What I do instead, is follow this ritual, with another just like it a couple of minutes later, and then a couple of minutes after finishing the second and ditto the third and fourth and… Before you know it I have eaten so many calories up to a certain point, a set point if you will, where finally the switch flips off and my “hunger” goes off, and so does the food-seeking…I can now settle down and get something done. but until the threshold is reached and surpassed, I cam think of nothing but eating. The cure for it, the only remedy, is that I must be sure to short circuit the cycle by taking Xyrem and forcing myself to go to bed after supper. And I must NOT eat all day and evening except for coffee and diet soda (luckily the Zyprexa induces food-seeking behavior and not real hunger, so I am not tortured as long as I do not break my fast), until right before bed I allow myself to take a few bites. If I do not eat at all, I do not feel like eating and the cravings do not even begin. It is when I do take the first bite, just like an alcoholic, that all bets are off and all the control gates to hold back the flood open.

I still think that Zyprexa induced eating and 15 mg of Abilify-induced lack of appetite would be a great way to study the science of appetite, what causes compulsive eating and what breaks that cycle and stops appetite and interest or uncontrollable interest altogether. I would agree to be that guinea pig but I’d aso say that plenty of people could do so…I don’t see why others would not react as I do, especially a plenty of people have had the same weight gain reaction as I.

I will try to continue my discussion of this topic soon, as I want to research it a bit and I have some further thoughts on the subject. However, at the moment I needs must get other work done…

TTFN

Oh yeah, by the way, Li and I had a decent discussion abut TLE during one of my recent visits and it made me feel better about him, for the time being. At least he is going to consider it, though he told me it never rules out schizophrenia as there are always a percentage of those with TLE that concomitantly have schizophrenia as well.

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“The Management”

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