Category Archives: Brain

OPEN LETTER TO SHANKAR VEDANTAM

August 10, 2023 Phoebe Sparrow Wagner 5 Comments

Dear Shankar Vedantam,

I listen to Hidden Brain every week with interest, and frequently I share what I have learned with others. But today I write in some dismay after listening to the segment titled, The Truth about Honesty. Right from the start of the broadcast the idea was promoted that telling Elaine she’s is a bad dancer is “honesty.” That Taya’s youthful disparaging comment to her mother about what her mother wore to go out was “honesty”. But in my book these are judgments and they say much more about the speakers’ own feelings and needs than about Elaine’s dancing or Taya’s mother’s inferior sartorial choices.

“Elaine is a bad dancer” is not a statement of fact. It is an opinion and a moral judgment disguised as something else. Maybe the people watching Elaine do not enjoy watching her dance, that may be their truth, but to call her a bad dancer is a judgment. Where are the facts? Who is the ultimate judge? Maybe she was feeling something wonderful as she danced (she says as much) and her dancing felt wonderful inside her. I myself loved the simile employed of a giraffe on a dance floor and my mental image was quite positive. All I know is people are very quick to judge others and find them in their view wanting. The notion that others clearly know better than the person they are judging gives these others, all of them, the “authority” to state their opinion as if it is an absolute fact. But the only facts that are real can be stated as objective observations. Elaine kicks her feet while she turns. She extends her arm. All else, like the “dry heaves” description is nothing but judgment, and it tells us only how the speaker feels, in no way truly informing the listener about Elaine’s dancing.

Many people state opinions as if they are facts. They state judgments good and bad as if they have the moral authority to judge others. But I think giving ourselves the authority to judge everyone else is precisely what causes conflict and suffering in the world. So often, when observing someone else, we tell ourselves how good or bad they are at what they are doing. Or we judge how they look. And we always find others better or more frequently worse than ourselves, constructing a mental hierarchy of worst-worse-bad-good-better-best. But these hierarchies are not facts either. They are opinions, they are judgments. We are all busy judging others and ourselves without reference to “observable facts” at all.

I don’t know what makes a good dancer or a bad dancer. Good and bad are moral judgments and in my view play no role in honesty. Evaluation? It’s an opinion, one that society may choose to value but in the end says nothing about facts. A flamenco dancer may not seem so skillful in tap shoes on a tap board. A self-taught dazzle of a break dancer may feel and look out of place if transported to the stage of Swan Lake. But to call any dancer bad is like saying she or he is an evil dancer, which would strike most people as absurd.

Honesty means being true to yourself, in honoring and understanding your feelings and knowing the difference between your feelings and your thoughts/judgments/opinions. Sharing your feelings honestly means keeping to statements that do not blame others for how we feel, because we know that we are the sole agents of our feelings.

The truth about honesty is that honesty is only about ourselves. When we acknowledge either to ourselves and/or to another, what we are observing, feeling, needing we are being honest. In terms of actions we can be honest about what we have done in the past, what we are thinking/feeling/needing in the moment, or about our intentions for the future. We can be honest about our motivations. We can be honest about having a judgment of another, but then we declare it as such, and recognize it is not the truth, not a fact, just a judgment. We can’t be honest about anyone else. Speaking my truth to another is about me, and not about them – it is about what I observe, feel and need. Period.

I think the biggest truth about honesty is that most people don’t know what honesty really is. And instead of being honest about themselves, their observations, feelings, and needs, they resort to judgments and verbal brutality. But what purpose does this serve? Cruelty doesn’t help anyone thrive in this world. If you want to be honest, look inward, know yourself. That’s where honesty’s function is, there and only there.

Best wishes,

Phoebe S Wagner

below is a link to the video in question, an episode from Seinfeld.

Art, Brain, Disability, Poems, Poetry

Review of my Last Book

April 15, 2019 Phoebe Sparrow Wagner Leave a comment

Not sure why link is not working but if you click on it you will get to Disability Arts Onljne, from there go to magazine, then click on newest reviews. The second one in, so far, should be about O-rings and Cathode Rays, that is to say, the review.

i will try posting this address which may copy and paste better than the link does.

Phoebe Sparrow Wagner: Learning to See in Three Dimensions – O-Rings and Cathode Rays

see my comment at the bottom of the review

http://disabilityarts.online/magazine/opinion/phoebe-spiro-wagner-learning-to-see-in-three-dimensions-o-rings-and-cathode-rays/

Africa, Brain, girls

10-Year-Old Nigerian Girl Top in UK University Mathematics!

March 11, 2015 Phoebe Sparrow Wagner Leave a comment

Just thought this, from allAfrica.com: Nigeria, should be publicized as proof positive that girls can do just as well as boys in math…and maybe better, when they are not discouraged or told they have “math anxiety”! Go for it, all you ten year old University-bound young girls!

allAfrica: African news and information for a global audience

via allAfrica.com: Nigeria: 10-Year-Old Nigerian in UK Varsity.

By Amaka Abayomi, With Agency Reports

Ten year old Esther Okade, one of UK’s youngest students from Nigeria, has been accepted to start her maths degree at the Open University. Esther, who enrolled three weeks ago, is already top of her class, scoring 100 per cent in a recent test.

Esther’s mother, Efe, said the process of applying to the university was ‘an interesting one because of her age.

she said “We even had to talk to the VC and after they interviewed her, they realised that this has been her idea from the beginning. From the age of seven Esther has wanted to go to university.

“But I was afraid it was too soon. She would say, ‘mum, when am I starting?’, and go on and on and on. Finally, after three years, she told me, ‘mum I think it is about time I started university now.”

Esther applied in August, and after a phone interview, an essay and a maths exam, she finally got the news in December that she had been accepted onto the course.

Though she watches cartoons and plays with barbie dolls, Esther’s aim is to get First Class honours degree in two years and start a PhD programme. She also intends to run her own bank.

Art, Brain, Health, Temporal Lobe Epilepsy

Made It Through the Night…PLUS Temporal Lobe Epilepsy versus Schizophrenia

September 24, 2014 Phoebe Sparrow Wagner 12 Comments

This flower, whose name, Self-Heal or Heal-All, says everything, and it is not insignificant that this was the first wildflower that started me on my Field Botany path, and was also the agent of my natural history conversion experience:

Self-Heal or Heal-all (My first wild flower and the one that changed everything)

Last night was a very difficult night, as you know.

I did not believe the nurse when she told me this morning that E–, who was an animal lover, would never have killed herself, leaving her beloved parrots to fend for themselves. She said it simply went against the grain of most animal people to kill themselves while their “children” still needed them. It turned out, though it took me a while to “grok” this, that E– apparently died of a combination of diabetes type 1 and asthma. The details are unclear and unnecessary but I was assured by both nurse and the building social worker that it was not suicide. Thank god.

However, early this morning things were not well, and I wonder if what happened later on was not at work last night as well. Let me explain:

I had an appointment to see my psychiatrist, Dr Angela, at 10 a.m. and as usual I got up to drive myself there, a short distance over the bridge to the next town, maybe 6 miles away tops. It is a trip I have done dozens and dozens of times, perhaps hundreds now.

This time, however, things were different. Halfway there, on a stretch of road — I’m talking back roads not highway — a road that I know like the palm of my hand, I was suddenly overcome by a feeling, an intense almost nauseating feeling of “jamais vu.” This is the opposite of “deja vu” — that sense that things you have never done have happened before. Jamais vu is the sense that while you are in familiar places or with familiar people, they seem strange or new or utterly unfamiliar. I have had deja vu many times, as have a lot of people, and I think it is a fairly common experience to feel as if something has “happened before” even though it is really a new experience.

But never before, at least not since I was ill, severely and neurologically ill, with Lyme disease, have I felt this intense feeling of non-familiarity in a situation that I know I knew very well. I was terrified, if briefly. I was not at all certain where I was. I mean, I kept driving, because my instincts told me to keep going, that my hands would make the proper turns. But my conscious brain had no recognition of where I was and no conscious notion that wherever I was I had ever been before. It was, as I said, terrifying and very, very strange.

Luckily, within minutes things had resolved enough so I knew that I had arrived at the Whole Foods parking lot, which my doctor’s office and the doctors’ complex shares. I still felt very weird. I felt in fact that I was not completely embodied, even though I carried a heavy enough bag to embody or burden down anyone.

When I got to Dr Angela’s office, the first thing i told her was that something was wrong. Yes, I had sent her the email I mentioned here yesterday, but I did not mean that. I meant the foreign feeling, the jamais vu intensity, which though faded still scared me. Thinking back, when i was so ill with Lyme it was actually deja vu, in an incredibly brilliant and vivid form, that afflicted me rather than the alienating jamais vu, but I knew that both deja and jamais vu can be commonly a symptom of either an aura or a seizure itself. Especially the much rarer experience of jamais vu.

I have had several different kinds of seizures in my life, and I have just been taken off Topamax, an anti epilepsy drug I have taken for years. I did this in preparation for a neuro-ophthalmology appointment in October (not sure why I thought it had to be stopped). So i have and had some sense that it was the d/c of this anti-convulsant that was the proximate cause if not the absolute cause for my symptoms.

But I was terrified that this jamais vu would generalize into a full-blown seizure, which I couldn’t bear the thought of. Dr Angela was quite responsive and suggested that I 1) take an immediate Ativan, .5mg as that is reasonably effective as an anticonvulsant, though better IV than oral and 2) when we found that I had stashed 100mg of Topamax in my pill compact, she had me take that as well, figuring I would get back to my usual 200-300mg within a week or two.

The appointment went — well, I don’t remember much about it, frankly. All I recall is leaving, promising to get a cup of coffee before I drove home, then realizing once I got to the parking lot that there was no way I could drive, coffee or not. I felt simply too weird. And weirded out. Too scared of having a full blown seizure, whether temporal lobe or otherwise to get in the car.

To my great luck, when I contacted my case manager, Rebecca, who works in next town over, she was immediately available and came to pick me up. That was a huge relief. I didn’t even have to wait more than 5 minutes. More, the Whole Foods grocery store people didn’t bat an eyelash when I asked if I could leave my car in the lot overnight.

Later on, Tim went and got my car for me, so I didn’t even have to do that. I simply went home and took a nap. When I got up I felt at least ten times better. Not so weird, not so seizure-y. Less scared, and finally able to be convinced that the huge balloon of misery and terror from last night was just that, a balloon, a mistaken notion…a fiction. I was wrong, that was all. Even though the conviction and certainty felt as real as anything, they were only FEELINGS, and as so many people including my brother assured me, those feelings would change if I hung in there.

Lo and they did change and have changed. Thank heavens.

Now it occurs to me that perhaps even that huge balloon of certainty may have been seizure-related. I don’t have any real reason to think otherwise. I know, I know, my shrink brother has his theories. But I felt so UN-conflicted about it, so hugely convinced, that the explanation of seizure activity, comparable to the certainty that I “have never been here before” of jamais vu even though I knew I had, and also knew, as I said, that I had not caused the putative suicide…this explanation simply makes more sense and feels “more right” to me. After all, why would I suddenly feel like I did anything to E— who was not all that important to me, or no more than anyone else in the building really. It felt morever just so hugely compelling, in precisely the same way that impending doom feeling of a temporal lobe seizure feels — it isn’t real but it is unshakable, utterly unshakable.

I don’t know, of course. The shrinks — and I include Dr Angela and my brother — would like to make it all about me, all about my conflicts and my mental illness however they want to define that. But I wonder now how much my ongoing (but unofficially diagnosed, that is, only by psychiatrists) TLE has affected me all along. I wrote about this conflict, this contamination of any schizophrenia diagnosis with temporal lobe epilepsy, and months ago. It seems strange that so many have “both”…|

Nevertheless, I have never had my seizure feelings checked out, largely because I do not want anyone curtailing my voluntary driving. And I don’t like doctors having that power over me. I also do not trust them to take me seriously, as a NON-psychiatric patient. I do take AEDs to prevent olfactory hallucinations, (NOT as mood stabilizers) and such, but why see a neurologist who might tell me I can’t drive a car for any length of time when I have never even had a fender bender from this? Or who might, and this would feel just as bad, tell me it is “all in my mind” not in my brain…!

Brain, Health, Medication, Mental Health, Schizophrenia, Uncategorized

Schizophrenia Medication: Should I or Shouldn’t I?

March 24, 2013 Phoebe Sparrow Wagner 3 Comments

This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.

Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.

This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…

I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.

Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.

The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:

One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.

In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.

In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.

I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.

So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.

One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.

Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
——————————————————————–

*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.

Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…

Brain, Empathy, Health, Health Care Reform, Memory, Mental Illness, Poetry, Psychiatric Unit, Psychiatry, Seclusion and Restraints, Trauma

Useless Psychiatric Mediation and a Poem

May 15, 2012 Phoebe Sparrow Wagner 2 Comments

(Before I write this blog entry, I want to send this message:To certain people from Middlesex Hospital who read this and are following developments in my case against you please be aware that I know who you are and I am watching you. You do not and will not get away with what you did nor with what you are doing now.)

That said, let me tell all the others of you out there what happened at the mediation- meeting-that- wasn’t, this morning at Middlesex Hospital.

As you know, I have been wanting this meeting for a long time, but when I got there not only did I discover that they were playing the game of “Oh, I had no idea that you wanted a mediation meeting, I didn’t know what this meeting was about at all…” but that the CEO had actually cancelled on last Friday the people that he had arranged to meet with me. So in fact the only people who came were administrators, not anyone who had treated or dealt with me on the unit itself, except the doctor who saw me for the last 11 days of my 6 week stay. He may have been the director of the unit, but he was hardly the main doctor I saw, despite what he claimed.

Anyhow, the meeting was extremely — well, first of all, it was largely a waste of time, because NOTHING was said of interest to me. Except that Dr Grillo, the unit director, after I read what follows, actually had the gall to claim that restraints were entirely appropriate…He said nothing whatsoever about what they did to me. OTOH, I can understand why. After all, he had already been told that we were writing the Department of Justice and the Joint Commission regarding his unit, so he must have felt supremely threatened. Naturally he could not have admitted wrong- doing. Not that any god, excuse me, doctor that I have ever met has ever admitted doing anything wrong or ever apologized. God forbid, a doctor apologize! No, that would be too hard and too demeaning for them to ever do. Better that they go along and permit torture and abuse than that they admit that there was wrong done to a patient on their watch, much less that they personally even made so small a thing as a leetle eensy meestake…

Well, I know what they did to me and I know it was abusive and wrong, and so far, except for Dr Grillo and that lot, NO ONE I have ever met outside of Middlesex Hospital has ever ever agreed with him and said, Yes, in fact the use of restraints was proper and necessary, and they were right to do what they did to you.

So take that, you watchers from MH. I hope you tremble in your boots for torturing me so. Because you never apologized, and wouldn’t’ meet with me to talk about it, it serves you right whatever happens now. I came down there today , and it took all the courage I could summon up to do so. I came down there, after two nights without sleep, just to meet with you and talk about what happened on April 28, 2012. But you couldn’t be bothered to deal with me, and so now you will deal with the DOJ and JCAHO. And too bad for you if that means that heads roll and some of you lose your gd jobs. I do not care any more. I tried, I tried to reconcile and talk with you about it, but you didn’t have the courage to do so, you wouldn’t deal with me, and so now you can deal with the powerful ones, and not me. Now I don’t give a damn what happens to you.

Meanwhile, this is what I was going to read to all of you, and what I did read to the hospital CEO and the administrative personnel, and what the advocates are sending along with the letter to the DOJ and JCAHO.

STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

Although I have a longer statement, I first want to read you a poem that I wrote about my experience here. It is only half a page long, but like any decent poem, it says a great deal in few words. The expression “Long pig” means a human being intended for eating.

TO MY PROTECTORS

I came to you fractured,

splintered to syllables,

all-fired to incinerate

the house of my body

where the devil lived.

But I was not nice,

not nice, not nice, no,

I was not nice enough

for balm and kindness,

or to win back my art

or my writing supplies,

so I upended a trashcan

on top of my head

and uniforms nailed

me, naked X, to a bed.

It gouged my brain.

Freight train. Tank.

Two years: still blank.

Nurses, doctors,

thieves: you knew, you

knew. You made of me

pulled pork, long pig

X-posed and pinioned,

not quite a specimen

for your knew the subject

and your objective :

your satisfaction showed

as you struggled to hide

your smiles.

I was admitted to North-7 in extremis: confused, psychotic, and traumatized. Exquisitely vulnerable, my sole comforts were doing art and writing. These were also my strengths. Yet instead of using these to help me, you consistently employed them against me–withholding supplies as punishment when you felt I was not behaving nicely and worse, using loss of them as a stick when they were most needed. The first time this happened was on April 9^th, nine days after I had been admitted. I had been using glue sticks freely to make a large collage for several days. Angry at me for yelling at her, one of the senior nurses whom I won’t name, decided to withhold them. She would no longer give them to me until, as she put it, “the team puts them on your treatment plan.” This frankly felt like such gratuitous punishment, and so unnecessary, not to mention counterproductive, that I could see nothing in it but petty revenge. Nevertheless, not myself and not in control, I screamed, “Fuck you!” and ran to my room. Luckily, Christobelle from OT, the one person who consistently treated me not only with understanding and kindness but with respect and dignity as well, came in shortly thereafter carrying two gluesticks. I do not know whether she knew of these new restrictions or not, but I was grateful.

On another later occasion, I had been using my soft felt-tipped markers, which my old treatment plan permitted me until 10pm. That treatment plan had been changed, however, and the new, more relaxed one said nothing about markers, so it seemed to me that I was now allowed markers in my room just like anyone else. However, around 10pm, someone called Bob came in demanding them. He threatened that if he had to ask, quote, “a 3^rd time you’re in for trouble.” My pulse ratcheted upward. Uh, oh, uh oh. Why was he doing this? Was he deliberately baiting me, trying to pick a fight? He could so easily have discussed my understanding of the new plan. It wouldn’t have been so hard to figure out a compromise. After all, they were just Crayolas, not carbon steel knives. I was sick of the power plays, and sick of the way staff just wanted to control me instead of talk to me and of how they insisted on domination at all costs. Well, this time I was not going to give up without a fight, and it seemed that a fight was what Bob was itching for. Instead of negotiation and attempting to find a compromise, Bob reached out to grab me, which I construed as an assault. I screeched, “Don’t touch me!” Someone else grabbed me from behind. I kicked and punched. Someone told me later it was Ruth I kicked. In my journal I wrote this: “she was furious enough to lie and scream that I caused an uproar ‘every single night and I’m sick to death of it!’…”

I fought them then, clawing and screaming, trying in vain to resist, my body flailing as the chart itself notes, my heart hammering. Why were they doing this to me over a few markers?! I wanted to scream. Why were they being such bullies? They were hurting me! But of course there were several of them against the one of me and they were much stronger than I at 102 pounds so naturally they overpowered me. They literally dragged me to the so-called time-out room and dumped me on the floor, ordering me to calm down. Then they closed the door. No they didn’t lock it, but they kept me from leaving by leaning against the door.

You know, I don’t know why you bothered calling it a time-out room. No one could use it at will. And when you put me there, I didn’t ask to go – I was forcibly dragged there — and I didn’t want to stay: you kept me there by force so it was the same thing as seclusion, literally and legally. Time-outs have to be voluntary, you have to be able to come and go if and when you want to. When it is forced, it is by definition a seclusion. Period. That cold barren room was not a time-out room. Who did you think you were you kidding?

And listen, did it never occur to you that it was always your treatment of me that generated my behavior, yes, the negative behaviors as well as when I was in control? You could have found out what was going on by talking with me. Instead, you decided to dismiss everything I said and did as manipulative and acting out so you didn’t need to listen to me. Perhaps you thought this disregard was kept secret from me, but I knew it at the time and it caused me enormous anguish. All I wanted was to be treated like a human being. All I wanted was to talk to someone and be listened to. But all you did was make assumptions. You never checked them out with me to find out if they were true and they almost never were. Assume makes an ass out of U and me…But mostly it does terrible damage when the assumptions are wrong. I was so afraid, I was so terribly afraid, but you never knew the half of it. All you did was to dehumanize me, ignore my pain and order me to shut up and be quiet. I know I was difficult for you to quote unquote “handle.” Hell, I was difficult for ME to handle. But I do not have a personality disorder. Ask anyone who knows me. Ask my family. Ask the psychiatrist who saw me from 2000 until 2009, ask the psychiatrist I see now. But you decided that you could detect borderline traits (somehow transmogrified into the full-blown disorder upon discharge…) despite the presence of an active psychosis. By decreeing that I had such a disorder, you put me in an utterly untenable position, because then you had a justification, so you thought, for taking nothing I said at face value. To me it felt like nothing less than soul murder and I will tell you that this particular form of soul murder makes a person want to die. It makes a person want to bash their brains out in public just to get someone to acknowledge them and take them seriously.

April 28.^.April 28, 2010. You wrote in my chart your interpretations of my behavior that day and of what happened. Yes, your nursing and physician notes were supposed to be objective but dispassionate as they may have attempted to sound, all observation is but interpretation. I repeat: All observation is interpretation. Now I want you to know what happened from my point of view. (I know that some of you have been snooping around, reading my blog just as you did during my hospital stay, but you will have to sit through this anyway…)

At around 7:30pm, so the evening nurse reported in my chart, I “walked into the dayroom” and if one can believe this, without any provocation I “began shoving and turning over chairs. I then, quote, “picked up the patient trash can and put it over my head.” Staff ordered me to what they called the “time-out room.” Nursing notes report that I refused and, I quote, “went to bed instead.” Because I had not followed her direct order, the nurse wrote that “security was called and patient required security to carry her to time-out room as she refused to move or walk.” No, I simply lay on my bed, mute, trembling with terror when the phalanx of guards roared in.

Despite my lack of resistance, the guards physically took hold of me – unconcerned apparently with my known history of rape and of recent trauma — and took me from my bed where I was calming myself in the least restrictive environment. They physically carried me to the seclusion room and together with staff they forcibly prevented me from leaving.

This is what I wrote in my journal: “It was (freezing in that room) and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back… this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote this: “Patient refused to stay in time-out room… Patient attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm.”

At this point both records state that I stripped off all my clothing. But the official records record only that fact, and that I then “was changed into hospital garb” and that I immediately stripped these off too. In my journal I wrote something else in addition that is rather revealing: Left alone in that room, I decided, and I quote, “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me.” So once again I took them off and got up and tried to push through the woman barring the [temporarily] unlocked door. She called for reinforcements and they came. In fact, they came en masse.

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because I needed someone to talk to. That was all I wanted, just someone to talk to. One guard seemed taken aback. All these personnel hours wasted when all I wanted was a half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.”

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.””

Why was it so dangerous when I was on one to one and had an observer at all times? It made no sense. And why wouldn’t they just give me a sweatshirt and socks then? Or turn up the heat. How did they expect me to sleep, I was too cold!”

But this last categorical refusal was just too much. No, no blanket, no nothing. Just shut up and freeze. “That was it, I’d had enough! I dashed at them head-first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me.”

As one guard shoved me onto my stomach on the hard floor, his knee in my back, he muttered in my ear, “You bite me, I’ll teach you a lesson you won’t forget!” Then he mashed my cheek hard against the dirty linoleum till I was breathing dust.

I knew he was capable of hurting me, they all were. I also knew that people can die during prone restraint as the Hartford Courant and others have documented. Adrenalin flooded me, my pulse threatened to rocket out of control but I knew I had to calm down. Very deliberately, I forced myself to lie still, barely breathing.

Fortunately, when I stopped resisting, they released me and let me sit up. Someone gave me a sheet to cover me. The room cleared, except for a tech who was on 1:1 with me. She apparently was now allowed to talk with me, and for this I was supremely grateful. We conversed calmly. The door to the seclusion room had been left open, a big relief.

However, people were still talking in low voices outside the door. I heard someone trot down the hall, heard the open-and-shut of a cabinet door. I asked my 1:1 what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”

“A bed?” I said. That gave me a bad feeling…Then I understood what was going on. “Uh, uh. They can’t put me in restraints, I am calm and it is illegal to restrain someone who is not a danger to self or others. You know that.” I repeated it loudly, loud enough so the other staff could hear me. I began to tremble, but forced myself to remain as composed as I could, mustering all the arguments I could against the use of restraints. A nurse entered the room then and asked me to come down the hall. Did I need an escort or could I walk there by myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm.” I was barely able to speak. I felt dizzy and short of breath but I tried desperately not to show it because I was afraid that if she knew how terrified and upset I was that it would actually give them justification. Nevertheless, I followed her to the empty room — my heart went cold, I could feel urine leak — I felt like “dead man walking” when I saw that in fact they had fastened four-point restraints to the bed.

I entered the room filled with staff members and guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one contradicted me. The nurse in charge ordered me to lie down on the bed. I protested. She threatened that if I didn’t “they would assist me.” I was terrified of another assault. In fact I was so terrified just of the physiological consequences of fear itself – the flood of adrenalin and painful tachycardia — that I made myself get it over with. I lay down on the bed. Gritting my teeth, I said nothing even when they pushed aside most of the sheet that covered me.

I meant to remain silent. I meant to remain completely still in order to shame them. But when they pulled my wrists right over the edges of the bed, shackling them painfully below the level of the mattress, and spread- eagled my ankles to the corners of the bed, I broke that silence and objected — vociferously. I was appalled at their barbarity but my protests did nothing. I fell silent and let them do what they wanted. Finally satisfied, they trooped out, some of them actually smiling, leaving me alone in the room. I fell asleep quickly, a narcoleptic stress reaction. Nevertheless, no one returned for an hour. They extracted a pledge of obedience from me before taking off the shackles.

“When they released me,” I wrote in my journal, “my back hurt so badly I could barely walk and…my scapula muscles felt as if they had been separated. ‘I plan to sue you for doing this to me.’ I said as calmly as I could as I left the room. Nobody reacted.” As I wrote in my journal the next morning, “I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder… the pain went clear through to the scapula.”

That was not the end of it. Once you treat a human being in such a fashion, all bets are off as to how she behaves from then on. I no longer cared what you did to me after that. When you threatened me with restraints a few days later, I dared you to do it. I egged you on and so you did. My capitulation showed subsequently when I stripped naked multiple times, even voided on the seclusion room floor and smeared urine on the walls. You reduced me to an animal. I hope you were pleased with the results.

From what I witnessed, many of you — on the nursing staff at any rate– took no pleasure in your jobs. You apparently didn’t want to work in psychiatry, and wanted nothing more than peace and quiet and an easy day’s work. When one of you actually screamed at me, after that staff assault occasioned because I didn’t hand in my crayons on time, that you were “sick and tired” of listening to me every night, that was stupid and nonsensical. How can any hospitalized psychiatric patient be expected to worry about what makes a nurse comfortable? By rights it should be the other way around.

I think what it comes down to at the North-7 secure unit is that you expected patients to meet your needs and make you happy and you tried to force us to. In my case, and in at least one other patient’s that I witnessed, you even tried to physically assault us into doing so. But what a farce. Patients in the outer unit warned me to get out of there; they told my friends they were worried staff would hurt me. They were right. By the time I was discharged, I had almost no memory of what had happened over the previous 6 weeks. It is only in the last couple of months that anything has returned to me. Yet every single day since my discharge, when I least expect it, something triggers a thought or bodily memory of my stay here and instantaneously my heart starts hammering, I get dizzy because I can’t breathe, and I tremble and cry just thinking about it because I’m right back in that seclusion room and April 28^th is happening all over again…

Now, I don’t expect to recognize any of you. How could I? I still don’t remember much except those episodes I wrote about, and some little snippets here and there. I am told that some of you will be nursing staff on N-7 and some my so-called treatment team. Well, if you were my treatment team and you just turned a blind eye to what went on, for that you are just as guilty as if you accomplished the acts yourselves. Of course, the worst of it mostly took place in the evenings, in relative secrecy and when few were around. But if you knew it was happening nonetheless and If you approved, well, then, I have nothing to say except shame on all of you.

I felt helpless and utterly alone. Frightened beyond belief. No one defended me, no one helped me or came to my rescue. No one except Christobelle Payne. Christobelle treated me with compassion and kindness. She always made sure that I had gluestix and magazines for my artwork, even when your every impulse was to withhold them as punishment. I cannot tell her how grateful I was and how grateful I remain to her for treating me so humanely. I have never forgotten the oasis of kindness she provided in your North-7 desert.

Apparently no one else on the unit understood how to behave humanely or to treat patients with respect, or no one else gave a damn.

Punishment is the nature of what you did to me. You lost your tempers and you punished me. The result was that you permanently damaged and traumatized me. I believe you did what you did absolutely on purpose and I believe you did not care what the consequences would be to me.

Some of you deserve to lose your jobs because of it and because of what I’d venture to guess you have been doing for a long time to other patients. Perhaps you will. You all need to be thoroughly retrained, if that is even possible. Certainly the secure side of the unit needs to be completely reorganized and re-staffed. But that is not my job. You’ll find out what will happen after the Department of Justice and the Joint Commission do their thing.

I hope you remember me and what you did to me for a very long time. Unfortunately, I know I may never be able to forget you. I wish I could, believe me, I wish I could.

Amnesia, Blog, Book, Brain, Memory, quotes, Reflection, Uncategorized, Writing

Memory is Fiction and Fiction, Memory

April 3, 2012 Phoebe Sparrow Wagner 1 Comment

Memory is fiction. I wrote that in 2005, believing I read it in the New Yorker somewhere. Memory is fiction. It’s not that we make our memories out of whole cloth; we believe we remember things clearly, but the mind is a funny thing and what we recall happened, and what “really” did are two different things. Of course, in the end, there is little way of knowing what is correct, unless the event was a public one and well-documented. Unless? Hah. Just think of one of the most public and most highly documented events of the 20th century, the assassination of John Fitzgerald Kennedy and try to come to some conclusion from the “evidence, the facts, about what “really” happened. The truth is, no one can tell you what really happened because everyone’s memory is different, and in that sense even though the objective evidence supposedly remains the same, each witness interprets it differently, through a different viewpoint and a different political and sociological lens. So where lie the facts of “true memory” and where is the bosh of “mere fiction” in that public event, those historically documented facts? Answer that and I am certain there must be a big prize out there somewhere for you.

But I suspect the truth is that this notion of “really happened” is just a big brainwash by those in power who have cornered the market on their own version of it. In truth (and these words all get so sticky here), if I believe something happened one way, and this belief has informed my life and behavior, isn’t that the most important thing about the event, more important than any theoretical “facts” of the matter? Given than no agreement has been reached about something so public that it ought to be obvious, Who killed President Kennedy? how can anyone tell me that an XYZ in my own little life that I remember clearly, happened rather in the fashion that they recall and not as I do? What gives their memories more weight than my own?

You can indeed turn it around and say Fiction is memory, and be just as correct, meaning that in all the stories we make up about the world reside parts of ourselves and our lives, that nothing is ever truly “made up” or completely foreign to our experience, however outlandish the characters or strange the events described . There is a truth behind the settings and deeds that derives from one’s center, making fiction a personal memory of the deepest sort.

People have asked how I could recall with such clarity events that happened 20, 30 or 40 years ago, even down to dialogue, the way I’ve written it in DIVIDED MINDS or prospectively in BLACKLIGHT, and all I can say is — aside from the fact that out of 40 years I remember very little all told, even though what I do recall, I recall with great vividness — that I feel I remember every event I recount as clearly as if it happened yesterday. There is no guarantee, mind you, if indeed memory is fiction, that I recall anything with factual accuracy, whatever that is! I can only claim to capture what memory remains of those years, to capture my memories, no matter how time has embellished or hardened them, or in fact hardened the embellishments.

As to DIVIDED MINDS, I remembered a great deal more than what I wrote, until the book project was finished, at which point I pretty much lost it all. Once it set the years down as “my story” I feel as if I mentally deleted all other remembered events as less important, therefore forgettable…I wish this hadn’t happened as there was much I used to and wished to recall. Perhaps I have earlier versions of my book without such deletions, on my hard drive to jog my memory, but it is as Annie Dillard, author of Pilgrim at Tinker Creek wrote, (I paraphrase) If you prize your memories, don’t write them down (because that solidifies them forever in a form that freezes out all others).

Nevertheless, not a word I have written either in DIVIDED MINDS or in BLACKLIGHT has been deliberately fictionalized. I remember each and everything that I have written about, though whether my memory be factually accurate or not is anyone’s guess.

As an aside, I know all too well how false memories may be unconsciously confabulated. When I lived at the Transitional Living Facility in Hartford in the 90s, the staff there and at the nearby hospitals were so intent on ferreting out “multiples,” the newest fad diagnosis, short for persons with Multiple Personality Disorder, that I am absolutely convinced they induced many if not most of the residents there to “remember” early childhood sexual traumas, incidents which they might never have “remembered” and which likely never happened. For instance, my friend Joe latched onto the “fact” that his father “molested” him — but the only evidence he ever gave for that was that he put his hand on his knee once while driving…Now, I never bought it, since it seemed a fatherly thing to do, a father putting his hand on the knee of a young boy! And Joe never once said that anything else ever happened between them. In fact, he always said that his father was a womanizer, if anything. Be that as it may, the residents were made to confabulate these false memories and this was a necessary prerequisite for the psychologists there to proceed to “uncover” the desired dissociative disorders, i.e. closet multiple personalities. I am telling you, it was a huge fad, and MPDs were coming out of the woodworks. I am convinced that many so-called multiples today, most of them, are residual from that terrible decade of the 90s, and they have not been able to let go of that diagnosis. Furthermore, no one, no doctor or therapist has been brave enough to deal with the lie that they were induced, even forced to buy into, and so the “fiction” is being perpetuated and their lives and no doubt others connected to them destroyed.

Forgive that tangent, but it is one aspect of memory — induced false memory — that does upset me, because it has destroyed so many lives, continues to, and no one is held accountable.

Nevertheless, for most and in most lives, those not deliberately ruined by multiple-personality-mad psychiatrists and/or overzealous psychologists, the “facts” whatever they may be don’t matter as much as one’s memories, as I’ve pointed out. Certainly for me, I’ve lived my life through my memories, and the memories have been what has influenced me, affected me, changed me and made me into the person I am today, for good or ill.

I have some other thoughts on this, but it is getting very late so I must quit for now and go to bed…TTFN (ta ta for now).

Acceptance, Art and artwork, Brain, colored pencils, Eating, Hospital, Medication, Natchaug Hospital, Psychiatric Unit, Wisdom House

Hospital Artwork

March 26, 2012 Phoebe Sparrow Wagner 5 Comments

Ogre Ate City — Me as the Ogre that Ate Manhattan

I did the last two of these at Natchaug Hospital this past winter, both of which may be obvious. The first, Under Attack from All Sides, was meant to express how I felt at the time, with the fingers pointing at me literally showing what the voices do, and the red high heel with a hand, strong, hefting that lethal looking spike — well those both belong to a certain someone I cannot name who wants me deader than dead and will do anything in her power to achieve it.

The second of the hospital pieces (I did others, but alas I gave them away and so never did have a photo of them to share…) is the last one posted here, the Ogre that Ate Manhattan, which is written partly in Spanish and partly in acronym. The message is KILL the Orgre that Ate Manhattan, but I figure you don’t need to understand that to enjoy the artwork…Not quite finished yet, but there is not a huge amount left to go…

Finally at the top is In her Hands, which is not done, though it may look it. This is a partly 3-D high relief piece, and partly a flat piece of acrylic painting. In truth a lot of it is optical illusion but not as a joke. The detail shows how her hands are painted onto the globe, not actually three dimentional at all; they just look 3-D because of how I painted them. I need to write more about more “important” things in my life, but for now this will have to do. (Addendum: I realized, days later, that I must have written the text of this very late at night, and possibly after I’d taken my Xyrem, the narcolepsy night time med. Why? Because a great deal of it was so badly spelled and some of it made no or little sense at all. I mostly do that sort of thing, dream talk, if you will, when I make the mistake of trying to write after I have taken my medication and get busy and forget that I am not “with it” entirely…so I am not aware when sense devolves into gibberish! Forgive me, anyway, if I seemed somehow sloppy if not wholly out of it!)

Pam W

Art and artwork, Brain, portraits, Uncategorized

NEW DRAWING: Elder Woman

August 18, 2010 Phoebe Sparrow Wagner Leave a comment

Unfortunately, while I loved this stage of the drawing, as I progressed I fear I ruined it…Or at any rate, it changed so drastically that I don’t know what to do with it, or where to go with it now. So I am putting what I have aside, since I no longer have this, to work on some other time. I wish I had taken a better photo of it at this stage, though. Anyhow, for what it is worth. Here she is, as she was…

Then this is the more updated drawing as it got “over-processed.” Actually, what happened was that the watercolor paper did in fact start to wear out under my many erasures, or at any rate the color, the pigment grew so thick that when I erased it piled up under the eraser so that I had to keep erasing more and more of the drawing each time in order simply to erase one spot, because I’d otherwise leave behind chunks of unsightly “solid waste” of clumpy pigment. Eventually I couldn’t even draw on the paper any longer, it had become so mushy under that burden of erasure and redrawings, and so I decided to finally be done with it and decided quickly to do what the erasing suddenly brought to mind: an upside down city-scape, somewhat surreal, floating in the person’s mouth, and on fire…Do not ask me why! It is simply because that is what I “saw” in the patterns left behind by the unerased and uneraseable lines and colors on the paper…

TO tell the truth, I am trying to figure out how to either redo or “fix it” into something that I can work with further, can figure out what to do with as is, or how to cover up without making it look “collaged together, since that was not the effect I started out looking for. I’m eager for suggestions if anyone has any!

And yes, I came back from Wisdom House yesterday, after 2 and a half days instead of 7…I was rather upset there, though the place was lovely and I thought that if the circumstances had been a little bit different I could have loved it…but I will write more tomorrow or today in the P.M. For now, I just wanted to let you know…

Brain, Schizophrenia, Temporal Lobe Epilepsy, Uncategorized

Schizophrenia and Temporal Lobe Epilepsy (cont.)

April 13, 2009 Phoebe Sparrow Wagner 1 Comment

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

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

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

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

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

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

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

Brain, Schizophrenia, Temporal Lobe Epilepsy

Schizophrenia and Temporal Lobe Epilepsy

April 12, 2009 Phoebe Sparrow Wagner 11 Comments

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

Schizophrenia Symptoms

By Mayo Clinic staff

In general, schizophrenia symptoms include:

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

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

* Incoherent speech

* Neglect of personal hygiene

* Lack of emotions

* Emotions inappropriate to the situation

* Angry outbursts

* Catatonic behavior

* A persistent feeling of being watched

* Trouble functioning at school and work

* Social isolation

* Clumsy, uncoordinated movements

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

Negative signs and symptoms

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

* Loss of interest in everyday activities

* Appearing to lack emotion

* Reduced ability to plan or carry out activities

* Neglecting hygiene

* Social withdrawal

* Loss of motivation

Positive signs and symptoms

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

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

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

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

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

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

* Problems making sense of information

* Difficulty paying attention

* Memory problems

Complex Partial Seizures Present Diagnostic Challenge

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

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

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

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

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

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

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

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

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

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

TTFN

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

Brain, Mental Health, Psychiatry, Schizophrenia

Delusions and Paranoia: past experiences

January 18, 2009 Phoebe Sparrow Wagner Leave a comment

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.

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Category Archives: Brain

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Schizophrenia and Temporal Lobe Epilepsy (cont.)

Schizophrenia and Temporal Lobe Epilepsy

Delusions and Paranoia: past experiences

"While I breathe, I hope"

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STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

TO MY PROTECTORS

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"While I breathe, I hope"