Tag Archives: delusions

Health, Psychiatry, Schizophrenia

Why Dr Steve Balt, Psychiatrist, is Not Sure Medications Work… And GOOD for him for saying so!

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Antipsychotics - NOT

From KEVINMD.COM and Steve Balt’s WONDERFUL ThoughtBroadcast.com

Why I’m not sure that psychiatric medications work

STEVE BALT, MD | MEDS | JANUARY 25, 2013

I have a confession to make.  I don’t think what I do each day makes any sense.

Perhaps I should explain myself.  Six months ago, I started my own private psychiatry practice.  I made this decision after working for several years in various community clinics, county mental health systems, and three academic institutions.  I figured that an independent practice would permit me to be a more effective psychiatrist, as I wouldn’t be encumbered by the restrictions and regulations of most of today’s practice settings.

My experience has strengthened my long-held belief that people are far more complicated than diagnoses or “chemical imbalances”—something I’ve written about on this blog and with which most psychiatrists would agree.  But I’ve also made an observation that seems incompatible with one of the central dogmas of psychiatry.  To put it bluntly, I’m not sure that psychiatric medications work.

Before you jump to the conclusion that I’m just another disgruntled, anti-medication psychiatrist who thinks we’ve all been bought and misled by the pharmaceutical industry, please wait.  The issue here is, to me, a deeper one than saying that we drug people who request a pill for every ill.  In fact, it might even be a stretch to say that medications never work.  I’ve seen antidepressants, antipsychotics, mood stabilizers, and even interventions like ECT give results that are actually quite miraculous.

But here’s my concern: For the vast majority of my patients, when a medication “works,” there are numerous other potential explanations, and a simple discussion may reveal multiple other hypotheses for the clinical response.  And when you consider the fact that no two people “benefit” in quite the same way from the same drug, it becomes even harder to say what’s really going on. There’s nothing scientific about this process whatsoever.

And then, of course, there are the patients who just don’t respond at all.  This happens so frequently I sometimes wonder whether I’m practicing psychiatry wrong, or whether my patients are playing a joke on me.  But no, as far as I can tell, I’m doing things right: I prescribe appropriately, I use proper doses, and I wait long enough to see a response.  My training is up-to-date; I’ve even been invited to lecture at national conferences about psychiatric meds.  I can’t be that bad at psychiatry, can I?

Probably not.  So if I assume that I’m not a complete nitwit, and that I’m using my tools correctly, I’m left to ask a question I never thought I’d ask: Is psychopharmacology just one big charade?

Maybe I feel this way because I’m not necessarily looking for medications to have an effect in the first place.  I want my patients to get better, no matter what that entails.  I believe that treatment is a process, one in which the patient (not just his or her chemistry) is central.  When drugs “work,” several factors might explain why, and by the same token, when drugs don’t work, it might mean that something else needs to be treated instead—rather than simply switching to a different drug or changing the dose.  Indeed, over the course of several sessions with a patient, many details inevitably emerge:  persistent anxiety, secretive substance abuse, a history of trauma, an ongoing conflict with a spouse, or a medical illness.  These often deserve just as much attention as the initial concern, if not more.

Although our understanding of the pathophysiology of mental illness is pure conjecture, prescribing a medication (at least at present) is an acceptable intervention.  What happens next is much more important.  I believe that prescribers should continue to collect evidence and adjust their hypotheses accordingly.  Unfortunately, most psychopharmacologists rarely take the time to discuss issues that can’t be explained by neurochemistry (even worse, they often try to explain all issues in terms of unproven neurochemistry), and dwindling appointment times mean that those who actually want to explore other causes don’t have the chance to do so.

So what’s a solution?  This may sound extreme, but maybe psychiatry should reject the “biochemical model” until it’s truly “biochemical”—i.e., until we have ways of diagnosing, treating, and following illnesses as we do in most of the rest of medicine.  In psychiatry, the use of medications and other “somatic” treatments is based on interview, gut feeling, and guesswork—not biology.  That doesn’t mean we can’t treat people, but we shouldn’t profess to offer a biological solution when we don’t know the nature of the problem.  We should admit our ignorance.

It would also help to allow (if not require) more time with psychiatric patients.  This is important.  If I only have 15-20 minutes with a patient, I don’t have time to ask about her persistent back pain, her intrusive brother-in-law, or her cocaine habit.  Instead, I must restrict my questions to those that pertain to the drug(s) I prescribed at the last visit.  This, of course, creates the perfect opportunity for confirmation bias—where I see what I expect to see.

We should also make an effort to educate doctors and patients alike about how little we actually know.  The subjects in trials to obtain FDA approval do NOT resemble real-world patients and are not evaluated or treated like real-world patients (and this is unlikely to change anytime soon because it works so well for the drug companies).  Patients should know this.  They should also know that the reliability of psychiatric diagnosis is poor in the first place, and that psychiatric illnesses have no established biochemical basis with which to guide treatment.

Finally, I should say that even though I call myself a psychiatrist and I prescribe drugs, I do not believe I’m taking advantage of my patients by doing so.  All of my patients are suffering, and they deserve treatment.  For some, drugs may play a key role in their care.  But when I see my entire profession move towards a biochemical approach—without any good evidence for such a strategy, and without a fair assessment of alternative explanations for behavior—and see, in my own practice, how medications provide no real benefit (or, frequently, harm) compared with other treatments, I have to wonder whether we’ve gone WAY beyond what psychopharmacology can truly offer, and whether there’s any way to put some logic back into what we call psychiatric treatment.

Health, Mental Health, Mental Illness, Schizophrenia, Trauma, Uncategorized

Am I Crazy? Hallucinations, Delusions or Consensual Reality

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What is real? Is anything true and factual? Or are we all just deluded and mad as hatters? This is a serious question.

What I recall and what was written down in my chart about a certain four days in July 2012 are so different it is difficult to figure out whether my experience was fact in any sense of the word or, as “they”claimed, simply paranoid and delusional. Of course there is some truth in paranoia and delusion, since even a paranoid’s beliefs are based in feelings that arise honestly and from a foundation, I firmly believe, in true things sensed but unacknowledged. Feelings always have their own veracity. But whatever the philosophers may say about the fiction of facts, still there is, there must be, something more to the consensual world of what happens than mere perception.

I mean, either that security guard in the Emergency Department last July deliberately attempted to strangle me, or he did not. Either it happened or in some fashion I imagined it. It is that simple, isn’t it? Yes or no, red or green, one or zero. Like a digital configuration, there’s nothing vague about it: either it happened or it didn’t.

There are records. I know what the ones they wrote say, as far as they go. But how to interpret them since so little was written down, and unless my memory is so completely at odds with reality as to have confabulated the entire episode – which by the way, is what they claimed all along – how to explain the discrepancies when so much is not even mentioned. That they whisked my gurney into a seclusion room and assaulted me en masse is my version. In theirs, the room change is noted only in passing, and of the IM medication all that is said is that it was given “NOW”. Nothing else of the incident I recorded in great detail in my journal some days later, and raged about from the first day I was admitted to the day I left. In fact, I’m still outraged, months later.

I wanted to go home, they wanted me to stay. That I was abjectly terrified of being kept there meant to them that I was “paranoid.” I claimed I had no problems and had never been diagnosed with a psychiatric disorder. That was a problem for they had more power than I did as well as my lengthy psychiatric history on their side to prove I must be crazy to make such a claim. Worse, I was loud, demanding, and in my increasing panic, getting angry. They saw my screaming as a threat. Even though I was blind to what was going on, any onlooker could have seen that I could not win and in the end of course I lost mightily.

But let me go back towards the beginning.

It didn’t help that I had arrived at the ED by ambulance and immediately refused to have my “vitals” taken, asserting that I was “fine!” I then accused the nurse of just wanting to get paid for taking them. In short order I was whisked to the so-called “purple pod” where the psych patients were buried for hours until the on-call psychiatrist deigned to come down to see them.

“Here,” someone said, thrusting a hospital johnnie and a pair of pajama pants at me. “Undress and put these on.”

I looked down and saw that I was already wearing pj pants from another hospital. No one ever knew the real nature of what I wore — they simply passed for scrubs — and they were so comfortable that I kept them on day and night. “I’m already wearing pajama pants. I only need to change my shirt,” I said.

“No, you are wearing very nice blue slacks. Now, put on the pajamas, or do you want a couple of strong men to put them on for you?”

“Actually,” I sniped, “they are hospital pajama pants. I pilfered them from –“ and I named the hospital. But I made a show of undoing the snaps so they would see that I was going to comply. The last thing I wanted was anyone touching me or “helping” me undress.

Soon an APRN, came by and I thought, Wow, they are quick here, maybe it isn’t so bad being taken to a big hospital. Maybe I can get discharged from here in no time. Unfortunately, she was there only to do a 15 second “physical exam” that consisted of looking in my mouth and listening to my back with her stethoscope. Period. Pronouncing me cleared for a psychiatric interview, she rushed off to clear someone else. Then I sat on the gurney in my cubicle and waited. And waited.

I remember being cooperative for what felt like a long time. I tried to sleep, and I listened patiently to what was going on around me. I swore that I would simply hold my breath and bide my time until someone saw me, so that, calm, I could present my case and they would see I was safe and sane enough to be sent back home, not admitted or sent to some hospital against my will. But it was taking so long, it was taking hours for someone to see me, and I knew they were doing it to me on purpose. Did they think I, too, was drunk or on drugs just like the others here? I started to complain that I had waited long enough and needed to see someone. I was NOT drunk, did not need to dry out. Where was the doctor? There was nothing wrong with me, I did not need to be here. I wanted to go home!

Things started happening then. Memory fails me however and even the chart, which I just obtained a couple of days ago leaves out way too much. All it says is that I was uncooperative, then irritable, screaming and combative. Meds were “offered”.

I remember this: When I refused to take soul-deadening Haldol by mouth, they descended on me, wheeled my gurney into a solitary room and jumped on me, intending to inject me by brute force. In the struggle, a guard gripped my neck and compressed the arteries, strangling me. I tried to get the nurse’s attention, burbling through forcibly compressed lips that I could not breathe. But her response, attending only to her needles and not even looking at me, was an impatient, “You’re all right!” In a pulse of panic, I jerked away as she started to shove the first needle into my arm.

“Damn!” she cried as a rush of blood spattered us and the needle danced away from my skin. “Hold still!”

I’d hoped to get some respite from strangulation but instead of letting go of me, the guard reasserted his grip on my neck and pressed down harder. I felt the light go black as blood failed to reach my brain. Darkness descended. Sounds grew confused and dim. Suddenly I knew that I could die, that this was how patients had been “accidentally” killed during notorious restraint episodes in Connecticut. I did the only thing I could: I went limp, hoping the nurse would get the injections over with quickly and that the guard would not kill me before she was through.

One, two, and then, astonishingly a third needle punctured my arm. She wiped my deltoid muscle with an alcohol wipe then removed herself from the gurney. “All done,” she said, removing her gloves with a smack and she nodded, indicating the door.

With a cruel leisure, the guard let go of my neck, but he leaned down as he did so and muttered in my right ear: “That’ll teach you a lesson about bringing a JCAHO case against M— Hospital…” Then he and all the others strode out of the room, leaving me alone in what I had already been warned was a soundproof room where you can “scream all you want, but no one will hear you.”

In other circumstances, I would have screamed, soundproof or not, as the door was left open. But nothing was ordinary anymore. A guard –  thuggish bully, no doubt a reject from the police academy — paid to protect people, had just partially strangled me in revenge for – what? What had I done to him? My case against that other hospital should have meant nothing to him. But what was clear to me, trying to get a breath and calm myself, was that I was not only not protected in the this ED, I was in mortal danger. I could not scream or rage in outrage, I could not even complain or demand to see a patient advocate. My life was imperiled. Still panting, trembling, in shock, I lay in the semi-dark of that single room and prayed — not to any god, mind you, but simply for my life, prayed to get out of that ED alive. I promised myself that I would not say or do anything “wrong,” would comply with everything they asked from then on in order to survive the night. But it was a long night ahead of me and I had no idea whether or not the guard would come back and finish the job. I was so terrified my teeth chattered. I felt a hollow coldness inside me of unutterable fear. And there was nothing I could do but lie there and hope he did not return.

__________________________________

I did not name the hospitals in the piece above, though I usually do, and I refrained from doing so because I do not know whether what I am going to write now is indeed true or not. But if it is not, then I do not want certain people being alerted to this blog post and reading it and taunting me with “Yehaw, we got away with it!” Read on, and you will see what I am talking about further on.

So as I said, I am in possession of my chart, the entire thing, 60 pp for a mere four day stay in the hospital about which I speak, including an approximately 10 hour stay in the ED.  In it, there is absolutely no evidence that anyone ever took me or what I had to say seriously at any time. Everything I said was dismissed as paranoid and delusional, grandiose, disorganized or confabulating. (BTW Confabulate does not mean lying, it means to unintentionally “fabricate imaginary experiences as compensation for loss of memory.” But whatever they thought I was confabulating I have not the faintest idea. Or memory. Alas, the chart says nothing of what I spoke about.)

What has completely upset the applecart is my own statement, written in my journal and elsewhere: “Why on earth would that guard care whether or not JCAHO was involved in that other hospital?” On that thought rests everything, because of course, he had to have cared mightily to have wanted to strangle me for it. Or did he? Did he care, and  in fact did he try to strangle me, and did he even say those words in my ear? I am serious.

 

You have to understand something: Once, years ago, I heard, or hallucinated, hospital nurses announce over the public address system in nearly the same words how they were going to “teach me a lesson” about — whatever it was I had done…and I knew I had heard it, knew I was hearing it at the time, except for the fact that I was on the phone with my sister at that time.  I held out the phone in the air so she could hear it too, but she told me she heard nothing, assured me that I was hallucinating. What I described was not only unlikely but so beyond the realm of the likely that she was certain  it could never have happened. “Its just your voices, Pammy,” she said, “you have to trust me, you are hallucinating.”

So remembering this, it gives me pause. For why would that guard care about JCAHO and that other hospital in the first or even the last place? What could it possibly mean to him? Security guards are usually hired from outside agencies so his over-involved concern with another hospital’s accreditation suddenly seems to me absurd.  And if he did not care, why would he have tried to strangle me? Oh, maybe he did hold me down too hard, and I felt that, yes. But if I could speak, then I know I could breathe, so I was not actually being strangled either.

Perhaps I was simply frightened? And could it be that in fact he never said anything at all? That I “imagined” those words, hallucinated them, and then continued to believe that I heard him say them and that he wanted to kill me, all the time since then? Could it possibly be that some of what the hospital personnel said was true — NOT all of it, but some part of it. That I was in fact hallucinating and delusional? It doesn’t make their behavior right. It doesn’t justify throwing me into seclusion and injecting me with IM meds when I was not a danger to myself or others. It doesn’t even make admitting me to the hospital the proper thing to do in the first place. But, but, but…if I have heard people say things, visible people say things that they simply have not said, when they have not said anything at all, and I know this has been the case, then it is, I admit, just possible that what happened at the ED this summer might be another instance of the same…It pains me to think this. It frightens me to think that I could have been so mistaken for so long.

But what’s more, I worry that I am wrong to believe I might be wrong!  That the guard DID say what I think he said, did intend to strangle me, and that I am giving him what he wanted: I am letting him drive me into believing I was/am crazy!

I do not know what to think. And I may never know for certain what happened. Not about this. However, one fact that I can corroborate in the record I am painfully aware I “knew” for months: I was given 3 IM drugs during that episode. Yet you only have to read my chart to see that I was given only 2: Geodon and Ativan. The third drug, Haldol, was canceled immediately after it was ordered. The records clearly state that only the Geodon and Ativan were ever administered. This is so striking an error of memory  that it too makes me think again about trusting what I was certain I heard in that terrifying room where they held me down and injected me.

 

I don’t know what to do with this…I don’t know how to handle it or deal with it. It doesn’t feel good, or give me any sense of relief. I dunno how I feel. Just shocked, I guess. And perturbed, because I don’t know what else I have experienced that never “really” happened.

Abilify, Art and artwork, Geodon, Natchaug Hospital, Psychiatric Unit, Seclusion and Restraints, Willimantic Connecticut

Natchaug Hospital Stay #2 and Update with Picture

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Just wanted to update you on where I have been and how I am: I  spent 6 weeks at Natchaug Hospital in Willimantic, Connecticut this past July and August and though I was discharged as much improved, I  am still having a difficult time, both readjusting and well, simply having a hard time of it. Although in the hospital they did a little adjusting of meds, increasing both the Geodon and the Zoloft, I am not convinced that either one made much of a difference nor that it did less harm and more good on balance. In any event, Dr C and I (at my request) soon eliminated the 25mg increase in Zoloft, and are now dropping the 80mg increase in Geodon. She is concerned that the 240mg is making me very irritable and more upset and frantic rather than providing enough relief  to make it worthwhile. Yes, the voices are much improved, but that could be the passage of time and perhaps due to a general decrease in paranoia, who knows? All I can say is that I cannot take this general state of overwrought irascibility, a tendency to snap at anyone who “looks at me crosseyed,” as my mother used to say.

Natchaug Hospital remains a very good place, the best I know, and just as I remembered, not least because they have a philosophy of kindness and compassion towards patients. In fact, they are excellent because they have a philosophy and are not simply flying by the seat of their pants, hiring whoever comes along needing a job, burned out or not. Not only is their philosophy based on compassion and not on controlling the patient, but they see no point in rules for the sake of rules. It is clear that if there is something in the unit set-up that doesn’t serve a particular patient, the Natchaug staff will bend it as far as they can and try to accommodate each patient’s particular needs. As I was frequently told, why make someone miserable when you can make them happy? It is difficult to be happy in a psychiatric unit, and many patients are miserable because of their illnesses, but not once did I ever see a staff member add to that misery willfully and certainly not to mine. (I frankly could not say this of two Connecticut area hospitals, one in Manchester and the other in Middletown.)

One thing that makes many patients happy at Natchaug, by the way, is that caffeinated coffee is provided at breakfast, a rare blessing in in-patient psychiatric settings.  And since everything is served cafeteria style, so you can have all you want.

They used to provide hot decaf coffee on the unit itself, which was a treat. Because one very ill patient tossed a cup of coffee at a staff member, however, and she was injured, and because for some reason they decided that that patient could not be restricted individually from having hot coffee, now no one is permitted hot drinks on the unit at all. Yet, I suspect that even he would have not thought it unfair to be kept from the coffee pot! I know that in other hospitals I have had restrictions placed on me that others have not, and no one thought it wrong or unfair to me…Anyhow, I dunno what to think, but it was their policy, a misguided one, perhaps, but who am I to say? I know everyone went nuts for a while about having to drink lukewarm “swill.” Finally, though, the patients simply gave up on the “coffee” machine and did without. Anyhow, I have to admit that when I first saw the hot coffee machine, I couldn’t believe it, not because I was thrilled — though I was — but because I saw an “accident”or worse already in the making…

Note: one of the few hard and fast rules  at Natchaug is one they cannot change because they will lose accreditation: no smoking. Smoking is simply not allowed, not even on hospital grounds. While certain patients have tantrums about this and might cause an uproar from time to time in order to try to force the staff to allow them to use the courtyard to smoke “just one cigarette, just this once, please, I am absolutely desperate!” it is simply not possible. But people are allowed the patch and gum and every effort is made to help smokers quit. Even though some staff acknowledge that the policy is unfortunate, even unfair, nothing can be done about it.

I was not, however, comfortable for most of my stay there, and was paranoid a great deal of the time. Of course, I did not understand that the staff was aware of this, so when I began to come out of my delusions of persecution, it surprised me mightily to discover that they knew that paranoia was the reason for my hostility all along. Nevertheless, up to the very day I was discharged, I was hearing people talk about me up and down the hall and at the nurses’ station.

Well, that is all I am going to write for today because I am, as of  a week ago, in the middle of writing my new memoir, and as the days progress I plan to put parts of it up here, for comments and for suggestions. Feel free to do both!

I will finish here with one of my latest drawings, which represents how I felt when I was restrained at Middlesex Hospital, both the time I described in a recent blog post, and the other(s) (for which I have amnesia) when Josephine told me I was more or less “out of control”…to which I can only respond: Violence begets violence, and perhaps if they had not perpetrated on me what they did, things might not have gotten out of hand, But then, that hospital is one that is guided by the Control for Control’s Sake philosophy and the nurses were bitter and angry people…Needlesstosay, they hated me if only because I refused to roll over and play dead, if not die.

Forthwith the picture.

Pam as Dead Meat: Let's Eat!
ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

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Photo by Sr Jo-Ann Iannotti OP

I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers  and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it  and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else,  this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing.  If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…

Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it!  It exquisitely represents both the spirituality of this place as well as peace and peacefulness.

Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.

Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!

I am drifting though…forgive me.

One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!

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Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it.  I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display  that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.

That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear  gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.

So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such  a fundamental level.

I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…

FOR A FRIEND SUCCUMBING TO AIDS, 1980s

For Roland

This could be your whole life,

thumbing a ride to wherever the cars are going,

the casual, tossed out hellos and good-byes

that turn around the axle of your quick life —

that far, just that far, and then you will stay,

forcing a stranger’s town into the shape of home.

Yet you’ve lived a dozen lives — in the Keys

with the one you finally loved, in western Portugal,

Nova Scotia. Last year, already marked, you spent

the winter in your bed,which just fit in a backyard shed

in Vernon, Connecticut. And there was a life

to accommodate each place, its sweetness and pain.

When we met, you taught me the local architecture,

the difference between Georgian and Greek Revival,

and you thanked me for the poems you gave me.

Then you called late one night, drunk enough to over-

dose. Thoughtlessly, I rescued you, a dying man…

You never forgave nor spoke to me again.

Now once in a while a car slows, pondering

your beard, your emaciation, the known and unknown

risks, sees you finally, and explodes away from the shoulder

where you stand, all its doors locked simultaneously

against those Kaposi’s inflorescences that stain

your dying…Roland, Roland, don’t you know

we all die in shame and alone? We die, perhaps,

not far from home, or perhaps, like you, wandering,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

Blog, Psychiatry, Schizophrenia, Uncategorized, Writing

Delusions of Grandeur

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To all whose websites I had linked to, I had to take them down because my email was hacked, but I will post them again soon. The email problem is completely resolved now.

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First I will paste in what I wrote back in 2006 about Delusions of Grandeur, henceforth  reduced to the easy-to-understand shorthand, DoG. (Sorry, all you dog-lovers out there!) Then I will elaborate and/or explain where I differ in my thinking now.

From July 2006, then (with a few edits for easier reading):

Delusions of Grandeur

Where do they come from? Mine were usually of a negative grandeur as you know. I was  the devil, the most evil person in the world, I needed to kill myself or burn myself to a crisp in order to save the world from my poison. I even went so far as to set my leg on fire, prelude to setting myself on fire in order to do this, and burned marks on my forehead to prove I was Cain, so people would be warned and stay away…as a result I have had ECT, been restrained, isolated, locked up for months and all the other humiliating things they do to people they think might seriously hurt themselves or others. And obviously I might have, and did. But whence came this sort of thought? And why do others believe they are God or Jesus Christ or as one person I met claimed, the song-writer who provided John Lennon with his music. Their delusions may seem more positive than mine, yet I know they suffered much as I did, probably because they too went unbelieved and scoffed-at. Where does this kind of false belief, clung to in the face of so much evidence to the contrary, come from?

I’m not completely sure but DoG seem, both in their positive and negative incarnations, to derive from a terrible feeling that you lack self-worth in the world, your secret knowledge — if you have SZ or another devastating mental illness, that it has robbed you of everything you were supposed to have, be and do, that you are entirely useless and empty and without value in life. The illness itself produces this feeling, and the feeling is secondarily strengthened as a result of having the illness. People who develop DoG respond to their feelings of worthlessness  with the conscious or unconscious fantasy of a powerful false-self to make up for the lack of real power — to do, to be, to create in life. Others, like me, accept our lack of value, only we exaggerate it until it becomes the dominant factor in our lives and colors everything, so that we cannot but refer everything to it and see all through its lens. We become convinced that if everything in our lives is contaminated by our worthlessness, maybe everything in the entire world is contaminated as well.

I don’t understand the transition from feelings of worthlessness to actual belief in false and grandiose facts, the transition to delusion. But I believe the connection is there, from lack of any sense of self-esteem transitioning somehow to delusions of grandeur. And that either positive or negative delusions all derive from a negative feeling, a lack of positive self-regard. I don’t think anyone who truly feels good about him or herself would ever suffer in such a way…

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I must have gotten tired near the end there, as it feels to me as if I simply gave up midway, and relinquished my train of thought, and my pen, so to speak, before I’d even tried to finish. Be that as it may, on rereading the piece, my first impression, the first thing that struck me and struck me with a punch was my use of the past tense when I was describing my own experiences with DoG. This seems to me, even now, as stranger than strange. Does it mean that there was actually a time, and relatively recent to boot, when I did not believe myself to be the devil, not feel that I was evil, did not secretly want, though in a controllable way (controllable in the sense that I will not do it, so fearful am I that it would eventuate in another terror-filled hospital stay…) to destroy myself via the flames? So it seems, but if so, I have as assuredly forgotten how that felt, how such thinking was as an experience, as I have the entire 6 weeks I spent in the hospital this past April and May. Which is to say, “utterly and completely.”

What I can say now, is that it is much harder to write about DoG at any distance, or with any real so-called insight into myself (despite reading my own words) because the feelings of evil and worthlessness I wrote about in the past tense then are so strong now, in the 2010 present. I won’t, at this time, ask (rhetorically) What happened? That is for another essay. But I will admit that for me to continue with this discussion I will have to refer to what I have observed about others and their DoG, rather than any I may or may not experience myself.

Zo! Here are basic definitions, lest you have forgotten them. For my nutshells, I quote the online Free Dictionary (thefreedictionary.com).

Delusion: an idiosyncratic false belief that is firmly maintained in spite of incontrovertible and obvious proof or evidence to the contrary.

Delusion of Grandeur or Grandiose delusion:  delusional conviction of one’s own importance, power, or knowledge or that one is, or has a special relationship with, a deity or a famous person.

delusion of persecution a delusion that one is being attacked, harassed, persecuted, cheated, or conspired against.
delusion of reference a delusional conviction that ordinary events, objects, or behaviors of others have particular and unusual meanings specifically for oneself.
Now, thinking about the problem I had when I first wrote about DoG, take that fellow I met, the putative song-writer of all John Lennon’s songs. He was not a happy guy. He gave not the slightest appearance of being thrilled that his songs were so popular and that Lennon had chosen them out of all the offerings he could have picked to sing and record. He claimed that he had given them freely, and wanted neither fame nor fortune, as I recall. But what troubled him, it seemed to me, what that “we,” the — I dunno what you would call “us” — ordinary people, not the rich and famous, not the celebrities with whom Lennon would have hobnobbed, but the (where did I get this word?) lumpen-prole. Actually, I think it was rather much smaller than that, even. I think what troubled him was that  other patients and staff members in the hospital (at that particular time) didn’t care, appreciate, value or even believe his great contribution to the musical world. Nevertheless, despite the use of very controversial ECT (shock treatments — which were rarely used in schizophrenia, and even today are not used often for SZ) his delusion persisted throughout his stay, and by the time I was ready for discharge after 2 months, he was being transferred to a longer stay facility.
Needless to say, whether a delusion of grandeur is “positive”, which is to say that the power one arrogates to oneself is “good” –one is God or Michelangelo or John Lennon’s songwriter, or whether it is “negative” in the sense that one believes one has the power of The Black Plague, the Great Influenza or Satan etc, there can on occasion be little else to distinguish them. Unbelieved, scoffed at, dismissed, ignored,  no one thrives. For some reason too, and again this is solely from the point of view of my experience, people with schizophrenia experience this dismissal, this isolation (from and by others) much more often than those with bipolar illness. This is not so incomprehensible either.
Someone who experiences mania may and often does espouse vastly grandiose delusions, but they can at first be so ebullient, so enormously cheerful and expansive (I think of poets such as Walt Whitman, whose Leaves of Grass, written and rewritten so many times, and so long and expansive itself it almost screams manic-depression — if you can forgive an exceedingly amateur diagnosis) that people are drawn to them, at least at first and for a time. In the grips of mania, a person can convince “anyone to do anything” they are that persuasive and indeed charming, in every sense of the word. But at a minimum, most do not drive everyone away from them, not at least in the beginning. So when a manic person says they wrote the songs that John Lennon sang, one is tempted to at least half believe them, and say, “Hey, you did? Cool! Tell me more.” But that fellow in the hospital, no one so much as listened to him, nor gave him the time of day when he went into his “thing” about Lennon’s songs, and so he was simply left alone to talk to himself.
Hmmm, have I wandered off the topic, or gone too far astray from where I was supposed to be heading? Well, if I have, forgive me. It’s the sort of thing I do all the time in my journal, and frankly it is far too late at night for me to remedy it, alas. So I will stop here, take a stab at proofreading, and hope I have written at least a few things for you to ponder.
As you know, I will be away from the 14th through the 21st, at the Writers’ Fellowship, so if I do not write before then, never fear. I shall write when I get home. (On the other hand, since a Silent Retreat will be going on at the same time, and since there is also Wi-Fi connectivity in the main social area or somewhere — and no one there to socialize with, who knows, I might even avail myself of the internet, and post something from there!)
Get to bed and sleep tight, all youse who are still up with me.
PS I do not know why the paragraphs in the last half keep running together but they simply will not separate no matter how many spaces I edit in between them…sorry!
Brain, Mental Health, Psychiatry, Schizophrenia

Delusions and Paranoia: past experiences

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During the second part of what I call my Y2K Meltdown, when I was hospitalized for 3 months, first in central and then in southern Connecticut, I was extremely — but what I call serially– paranoid. What I mean by this is that plots occurred to me one after another seemingly without end. A new conspiracy would “appear” out of nowhere, as of course paranoid plots tend to, generated as they are by that two step process, described in the “Paranoia and Hallucination” entry. It would “do its thing” as they say, run its course, wreak its own havoc, then having done so, pop or be defused, and disappear. But almost immediately and, without my having any sense that this was happening or had any pattern, in its place another conspiracy would arise to take its place.

 

An example: at one point during that same hospital stay, having smelled what I was certain was marijuana coming from the art supplies room, I became convinced that the staff had been infiltrated by drug dealers selling weed and stronger drugs to patients. I’d mentioned the smell — no doubt some innocuous meaningless odor, if it existed at all — to a male nurse, and the look he gave me convinced me that he was involved. As a result, I realized that my knowledge of the presence of drugs on the unit made me dangerous to him and the other dealers. I felt frightened that he might retaliate, threaten me, or worse, hurt me when no one was around or could help me or know he was responsible.

Terrified enough to start talking, I told the doctor, and I called my sister and begged her to come in and sign me out. Please take me anywhere else, I begged. I would agree to any other hospital only get me out of there where I was in mortal danger. It was, I knew, after visiting hours, indeed it was after bedtime, but she had to come in and get me, now, or I might not survive the night.

 

Incredibly, she actually came in, if only to make sure that the staff was aware of my extreme distress. I knew only that she came to check out the drug situation and was devastated when she left without taking me home with her, though by then she had managed to “talk me down” some, convince me that I was in less danger than I believed, and that at least some of the staff were on my side and would be watching out for me all night.

 

Somehow, her words got through to me, and by the next day, the matter of the drug  conspiracy was resolved, though I cannot recall exactly how.

 

All I know is that as the urgency of that situation ebbed, I became aware that a new patient had arrived on the unit. Cally wore a raglan-sleeved sweater made of what I immediately apprehended was a washable wool yarn called “Candide.” Now, I knew only one other person aside from myself who knitted sweaters like that made of Candide yarn and she was the woman who had taught me to do so. “Lisa” not only knitted many such a sweater but did so for her long lost daughter, “Cally,” who had been given away for adoption many years before. The fact that “Cally” lived in North Dakota, last I knew, was of no importance to me. What seemed of paramount, vital and decisive importance was 1) the Candide wool and raglan sleeves, and 2) the fact that Cally appeared to have Lisa’s ballet-slender body type. These two coincidences in fact absolutely clinched the matter. Cally was “Cally,” wasn’t she?

 

These equivalences might not have been so critical to me, except that, it suddenly seemed that Lisa had died. She had committed suicide, so the message was communicated to me, and I had now to inform Cally of the fact that I’d known her mother way back when. I felt it was incumbent upon me to tell her what she had been like, that was the mission I’d been given. But  first I needed to ascertain beyond a shadow of a doubt that this Cally was indeed Lisa-my-former-friend’s daughter “Cally”…

 

If this was not a true paranoia that instantly arose following the death of the drug dealing plot, it was a delusion coupled with the felt urgency to act on what I was certain I knew (not so different from the marijuana delusion after all). And it was only one of a long string of plots and serial delusions that followed one upon another almost without a break that winter and spring. Just as I described in my entry of the other day, not once in the midst of any of these conspiracies or delusions was I cognizant of what was going on or able to step back and analyze the situation with any objectivity. At that time, I did not even have the tools I have now to dissect an incident after the fact: I was at the utter mercy of my brain illness, without any insight whatsoever. Now, at least, I can step back after the experience and say, Wow, I must have been really paranoid to think such a thing, or That was a hallucination after all…My goal, and a real triumph would be to recognize these things in medias res, that is, right while they are happening, but so far that does not seem to be possible.