Category Archives: Memory

The Obituary of an Extraordinary Woman, My Mother…plus

IMG_0029SPIRO, Marian Wagner, 89, of Madison, CT and Amherst, MA died on June 18, 2017 at the Hospice of the Fisher Home after a lengthy illness. Marian was born in Fall River, MA on February 16, 1928 to Oliver and Carolyn Wagner. She was raised in Fall River during the Depression and graduated from BMC Durfee High School. She then earned a two-year degree from Vermont Junior College that enabled her to work as a lab technician. It was at a lab at Harvard Medical School that she met her husband Howard Spiro. They were married in 1951, made a home in New Haven, CT and quickly had four children: Pammy, Lynnie, Martha, and Philip. In the meantime, she returned to school, received her undergraduate degree and in 1970 began a twenty-year career as a renowned teacher of science and math at The Foote School in New Haven. She introduced computers to her students long before they ended up in their back pockets and once built a solar-heated oven to bake the Thanksgiving turkey. She helped to revive the school newspaper, which was later renamed the “SPI” in her honor. Her dogs were frequent guests in her classroom, and when she wasn’t helping to train her friends’ dogs or hosting canine pool parties in her backyard, Marian was taking her own retrievers to local hospitals or mental health facilities to hang out with patients. Throughout her life, she was known for expert woodworking skills, her intuitive ability at navigating a sailboat, her competitiveness on the tennis court or in a game of bridge or scrabble, her love of golden retrievers, her lasting friendships, and her deep devotion to her family. She never let the social conventions of her day block her dreams: she embarked on a lifetime avocation of woodworking despite being told it was not for girls, she became a teacher of science before most scientists would accept women as their peers, and she even made the phone call to Howard for a date that led to their eventual marriage. She will be sorely missed by her four children: Pamela Spiro Wagner, Carolyn Spiro Silvestri, Philip Spiro and Martha Spiro; her six grandchildren: Allison Spiro-Winn, Jeremy Spiro-Winn, Hannah Spiro, Claire Spiro, Oliver Spiro and Adriane Spiro; and her many friends and students. She follows the passing of her parents Oliver and Carolyn, her husband Howard of 61 years, her sister Barbara, and her brother Oliver. A memorial service will be scheduled at a later time. In lieu of flowers donations may be made to the Marian W. Spiro Fund for Science Enrichment at The Foote School in New Haven, CT or the Hospice of the Fisher Home in Amherst, MA.

______________________

The obituary above was written by my wonderful “cousin in law,” Jere Nash, who is Holly Wagner’s husband, my uncle’s daughter (who was my mother’s late brother, Oliver who died many years ago of malignant melanoma).

All that follows is my interpretation of things, as all observation is of course but in my case you have to understand that I speak largely as an outsider, not knowing very much since I was not “in” the family for so many years…

Although I lost many years with my mother as an adult, due to my father’s “exxing” me out of the family in anger and a profound lack of understanding of “mental illness” and what was going on for me at the time, I still remember her in my childhood, how when there were still trolleys in New Haven Connecticut (oh, how young I must have been then!) she would either bravely or completely nonchalantly wear jeans  to go shopping downtown at Malleys or whatever the stores were there at the time. For anyone else this would have been extremely difficult, disregarding all the social mores of the 50s dictating that women had to wear skirts and heels and make-up to go out presentably in public. I do not know how my mom felt about it, only that she did it and did not seem to care what others thought. She cared only that she was more comfortable in pants, and low- heeled  “girl scout” shoes, the same kind I wear to this day, and she saw no sense in getting all dressed up just to bring 2 very young children out to go on a stressful shopping expedition.  As for that, my mother to my knowledge never wore more make-up in her life than a dash of lipstick, though I do remember her applying that with care every morning and blotting her red lips on a fold of toilet paper, thinking both how beautiful she looked (though she never  in her life agreed with me or anyone else on this, even though when she was younger  — when we lived in England — my friends thought she looked like a “movie star”) and how I never wanted to have to put “that stuff” on my own lips.

Unlike her children, who suffered from oily skin and troublesome largely untreated acne as adolescents, my mother’s bane of existence was her dry skin  and its tendency to wrinkle  so her one vanity, if you could call it that, was moisturizers and trying to deal with skin that aged earlier than she might have wished. She was also a outdoors lover, a sailor and a tennis player in the days well before the publicized benefits of sun screen, which may or may not have played a role in this (I am not completely convinced of the safety of sunscreens with their nano chemicals nonetheless)…Whatever is the case, it seemed true that her skin did show the effects of being out in the weather early on, but this to me only gave her face character and the true beauty of an older woman…though I know that as I was growing up it may have caused her more regret than I knew.

We are all of us subject to society’s images and social pressures, and my mother was not immune to these, no matter how iconoclastic and “her own person” she may have been in so many ways. For example, as a result of having been a self-described  “chunky athletic tomboy with a tiny petite older sister” — and feeling rejected for this all her life,  she fought a poor self-image, body hatred, and deep conflict on that account, such that I have always felt that in some sense while she loved food and eating, she also never took a single bite that she did not simultaneously regret and chide herself for. This was painfully obvious to us children, I think, at least it was to me, and it continued throughout her life. Even after nearly forty years of not seeing her, I would go out to lunch with her when she was in her 80s, and hear her criticize herself  about what she was eating. How I wished she could simply enjoy food for once, without the concomitant agonies of needing to punish herself for it.

Maybe she got some peace at some point, perhaps dementia granted it to her, but at what a terrible price.

I think that for my mother, one of the sad consequences of being married to a man like my father was that she never felt that he took her intellect or her creativity seriously or even  consequentially. True, he got her to go back to college and finish a four-year degree, and take up teaching, but he never truly treated her with the same esteem he granted an equal, and we all felt it and knew it, and what is more, she did too. No doubt this was largely behind all her words of abuse and rage in later years when she could scarcely speak to him civilly even when  he had himself ceased to be abusive.  It was hard to listen to her snark and scorn him, when he was trying his best…But by then it was much to late to undo the damage his lack of care and cold abusiveness had wrought for so many years beforehand. It seemed to me that she just could not forgive him, especially not for “changing” on her so unaccountably in his latter decades…

 

This is the rather in-expert poem I wrote for my mother’s birthday in 2007 about all that she gave us growing up…

 

YOUR OWN OCCASIONAL POEM 2/16/07

 

You push the wood under the saw,

the sawdust scent is sharp and familiar.

First time in months, you’re in the woodshop;

at the end of the day, you’re sorry to stop.

 

 

It’s mid-February, the pale wintry light

has long ago left. You look up. It’s night

and you haven’t appeased yet your hands’ appetite,

their urge to create. I know as I write

 

 

that hunger of hands to handle and make,

your children all feel it, the pleasure, the ache.

You taught us love, gave us skills that you knew

copper enameling, pen and ink, too,

 

 

the weaving of baskets and papier maché

antiquing desks and working with clay,

sand casting, knitting (you couldn’t crochet).

 

 

You fired up a hunger that’s better than food

a hunger that drives us, the right attitude

to make things of beauty, for need and for use.

With paper pulp, wood, fabric, clay, we produce

 

 

unique objets d’art not entirely planned.

We make them with care and the love they demand

and when they are finished, we give them away.

(The joy’s in creating; they’re not meant to stay.).

 

 

You gave us the spirit, this need and the drive

this hunger, this feeling of being alive.

I don’t know if knowing, you planted the seed

but the plant it grew gives us all that we need.

 

 

(A mother like you is so rare you’re worth pay,

which conveniently rhymes with this:

Happy Birthday!)

 

 

 

 

 

 

 

 

Miracles: Four Life Changing Events

©Jesse Taylor (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons
Okay, so as a friend suggested, maybe there have been five not just four miracles, with the most recent miracle having occurred, and ongoing, about three weeks ago. But more on that later. First, a definition of miracle, so we are all clear on what I mean here.

CS Lewis, a popular Christian writer of the twentieth century and still known for his Narnia Chronicles, wrote that “a miracle is something that comes totally out of the blue…” Now, he meant something extremely unlikely, like a virgin female giving birth to a child. Now, apparently, this has been observed at least once in modern times. If you don’t believe it, and can understand the technical language, you can read the following abstract as proof. Then you can decide whether or not virgin birth still counts as a miracle:

Fertil Steril. 1992 Feb;57(2):346-9 .

Chimerism as the etiology of a 46,XX/46,XY fertile true hermaphrodite.

Source: Department of Obstetrics and Gynecology, Chicago Lying-In Hospital, Illinois.

Abstract

OBJECTIVE: To determine the conceptional events resulting in a 46,XX/46,XY true hermaphrodite and to report the first pregnancy in a 46,XX/46,XY true hermaphrodite with an ovotestis… (see the rest of the abstract at PubMed)

Another thinker, British mathematician John Edensor Littlewood, suggested in what became known as Littlewood’s Law that statistically individuals should expect one-in-a-million events (“miracles”) to happen to them about once a month. By these calculations, seemingly miraculous events are actually commonplace.

And of course there is the dictionary definition of miracle, which is the one commonly accepted by both religious people who believe in miracles, and those who do not believe in their existence, but who do accept the definition of the word.

mir·a·cle/ˈmirikəl/

–A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be of divine origin

OR

–A highly improbable or extraordinary event, development, or accomplishment

I myself would add a third, and relevant definition, or qualifier, which is “if it occurs in an individual person’s life, the event produces changes, beyond any that could have been imagined prior to the miracle, in a positive direction wholly unexpected and therefore regarded as miraculous.” To be cured from a terminal or crippling illness is of course a miracle. But so too to my way of thinking would be remission from a future-destroying addiction or mental compulsion. Needless to say, complete reversal of a severe mental illness would count as a miracle. And I can think of others that might be counted as less effulgent but just as miraculous.

Given those broader categories of miracles, then, I will proceed to tell you of mine. I do not know what the Course on Miracles is all about, nor anything of the Miracle classes offered online. If there are similarities, I dunno what it means, except that we came up with our thoughts completely independently. I have spoken of the following things as miracles for many years now without any familiarly with the C.O.M or any other such program.

So, onward to my First miracle. (Alas, I fear I will have to deal with the Second Miracle and the Third, Fourth and Fifth in following posts as this one is already getting long enough and will be longer by the time I am finished.) The first miracle concerned, as some readers may remember, plants, wild plants, field botany, in short, the wonders of the wild green world. But not just that, no, it was the discovery in myself, utterly unanticipated, of a bizarre and wonderful ability to simply know, almost without any idea how I knew it, any plant I came across. In fact, I must have seen them, if briefly, in some plant book or field guide, but it was truly uncanny, my ability to instantly recognize and categorize whole families and genera and then the species within them just by casually looking at any plant, flower or tree I saw, having but  glanced at a simple sketch or pencil drawing of a plant the night or even a week before seeing it in the wild.

I once wrote about this miracle in my first blog at http://www.schizophrenia.com. Although the essay has a less than happy ending that has nothing to do with miracles, I will reprint the essay in its entirety here. Suffice it to say that the pivotal moment,  the chairotic moment and miracle that surrounds “Prunella,” which I describe early in the piece, changed my life forever.

WILDFLOWERS ON THE ROAD TO DAMASCUS

Thirty years ago, I took the natural history course purely for exercise. I figured, what better way to stay in shape than to get credit for it? At the time, I couldn’t tell a maple from an oak, let alone one old weed from another, and it wouldn’t be easy. But just to keep off the flab would be a benefit in its own right. Since the prospectus promised daily field trips, no mention of love or awe or wonder, the last thing I expected was a miracle.
Showing up for the first day’s trip, I wore old tennis shoes of the thin-canvas Keds variety. I had no idea L.L. Bean’s half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I’d made a huge mistake and it was too late to change my mind — I’d have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting “exercise” than I ever would have with my thighs turning to mush, safe in the college library.

The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we’d gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. “Heal-all. Prunella vulgaris,” she announced sternly and without passion. “Vulgaris means ‘common.’ Learn names of both genus and species. Be forewarned, ‘Heal-all’ by itself will not be an adequate answer on your quizzes.”

She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names we’d been given. I was still at the back, waiting my turn without the least enthusiasm, let alone the anticipation of what, in those days, we called a “mind-blowing” experience.
“Come on, now, don’t be shy. Step up and look for yourself,” Miss G scolded me, pushing at my elbow to propel me closer.

Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when she’d said: “Weeds are only wildflowers growing where they aren’t wanted.”

Prunella, I know now, is no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem – on impulse, I’d reached out to touch it and discovered an amazing fact: the stem wasn’t round! – Heal-all was the single most beautiful thing I’d ever seen. The world went still. There was only me and the flower and the realization I’d fallen in love.

Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I’d been struck by unexpected lightning. I’d been converted. I put away my notebook, knowing I didn’t need to write down a word, knowing I’d never forget “common Prunella” as long as I lived.

There were other miracles in my life after that, but none came close to the thunderbolt that knocked me flat the afternoon I saw, truly saw, that homely little mint for the first time. “Sedges have edges and rushes are round and grasses have nodes where willows abound.” Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less unconsciously, and gold would magically appear.

I went walking in the woods every chance I got and carried Peterson’s guides with me even into town, checking out the most inconspicuous snippets of green that poked through the sidewalk cracks. The first time I came out with a certain plant’s genus and species before Miss G told the class what we were seeing, she looked at me oddly.  I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too entranced, looking at each tree, to keep up the pace.

By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds. It was the trees and wildflowers that stole my heart entire.

At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: “Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class.” End quote. “Failed to share her established expertise“? What was she talking about? Did she think I’d already known everything she taught us? How could she not understand what she’d done for me, introducing me to little Prunella, how I’d learned everything I knew after that moment, not before?

It was the worst evaluation I’d ever gotten, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she’d been called away on a family emergency and would not be returning until the next semester. But I wasn’t returning for the second semester. I was transferring back to my original school.

I caught my ride home, spending four hours crammed into the back of an old Volkswagen bug with two other students, wordless with indignation that replayed and reverberated through my mind. How could she think such a thing? I couldn’t stop writing a letter of protest in my head as the highway flowed endlessly beneath us.

I did write Miss G, finally, explaining all she’d awoken in me, emphasizing the magic I’d discovered in her class, my new-found joy and amazement. At the end of March I got a reply, but no apology, no hint that she understood she’d misunderstood. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn’t quite remember who I was, that I was just another faceless student writing to her about a natural history course she’d taught perhaps forty times in her long career as a teacher.

Whether she knew who I was or even recognized what she’d done for me mattered little in the end. What did matter was that when I met homely little Prunella, I discovered the whole world in a common weed.

©Pamela Spiro Wagner, 2004

The next posts, or in the following weeks, I hope to cover the other four miracles. If you are interested in them, and I fail to follow through, feel free to “goose” me with a reminder. My mind is a sieve and I rarely remember anything without a string tied to my thumb! 8D

Useless Psychiatric Mediation and a Poem

(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 9th, 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 3rd 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 28th 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.


Shock Treatment/ ECT – Therapy or Torture?

Freud and an angry God, hmm, I mean Doctor, electro-shocking a poor ant. Drawing by Pamela Spiro Wagner, 2012 (all rights reserved)

Although most of this post was written and posted back in 2011, I have both edited it and written an addendum, especially for the students in Holly C’s course, with whom I will be doing a Skype class on Monday. If others do not want to reread the post and wish to skip to the end where I have placed the addendum, feel free.

First though, please be aware that descriptions and names of places and so forth have been changed back to their originals except for the names of some people involved, such as my doctors. Those names are somewhat similar, but still disguised. In Divided Minds, we were forced by the publishers to completely disguise everyone, including their physical descriptions, and to make amalgams in some cases, taking two doctors and blending them into one. In Blacklight, by contrast, I am determined that my descriptions of people, previously altered in order to “protect them,” will be honest and forthright,  rewritten so that while their names may be changed, their descriptions are as aboveboard as memory makes possible. After all, I write nothing but the truth as I remember it. I wrote a fair amount in my journals at the time and I referred back to my notes there in writing this. What is more, I intend no libel  and in fact, I want only to be  fair and to bend over backwards in giving as much credit as possible where it is due.

The Ogre Has ECT: 2004

I am delivered like a piece of mail to the Hospital of St Raphael’s, on a stretcher, bound up in brown wool blankets like a padded envelope. It’s the only way the ambulance will transfer me between Norwalk Hospital and this one. The attendants disgorge me into a single room where de-cocooned, I climb down and sit on the bed. All my bags have been left at the nurses’ station for searching; this is standard procedure but I hope they don’t confiscate too much. An aide follows me in to take my BP and pulse, and bustles out, telling me someone will be back shortly. I sit quietly for a half an hour, listening to the constant complaint of the voices, which never leave me, sometimes entertaining me, most of the time ranting and carping and demanding. A thin, 30-something woman with curly blonde hair, rimless glasses and residual acne scars that give her a kind of “I’ve suffered too” look of understanding, knocks on the door-frame..

“May I come in?” she asks politely.

“I can’t stop you.” My usual. Don’t want to seem too obliging or cooperative at first.

“Well, I do need to take a history, but I can come back when you’re feeling more disposed…”

“Nah, might as well get it over with.” Then, nicer, I explain, “I was just being ornery on principle.”

“What principle is that?”

“If you’re ornery they won’t see you sweat.”

“Aah…”

“And they won’t expect you to be medication-compliant right off the bat.” I shrug my shoulders but grin, I want to think, devilishly.

“I see you have a sense of humor.”

“You should see me…”

“I’m sure we all will. A sense of humor is very healthy. But it worries me that you already plan not to take your meds.”

“I’ll only refuse the antipsychotic. Look at the blimp it’s turned me into.” I haul my extra-large tee-shirt away from my chest to demonstrate. Fatso, Lardass! Someone snipes. She doesn’t know it but you really believe you’re thin. Ha ha, you’re a house! Look at yourself! LOOK at yourself! Ha ha ha ha! The voices are telling the truth: I know the number of pounds I weigh is high, outrageously high for me, having been thin all my life, but I haven’t lost my self-image as a skinny shrimp, so I can’t get used to being what others see. The voices love to remind me how fat I really am. Only the mirror, or better, a photograph, reminds me of the honest to god truth, and I avoid those. I avert my eyes, or search the concrete for fossils, when approaching a glass door. Anything not to be shocked by what I’ve become. Pig! Glutton! It seems they don’t want to stop tonight…

I realize suddenly that I’ve lost track of the conversation.

“I don’t think they’ll allow you to do that for long.”

“Do what?”

“Don’t you remember what we were talking about? Were your voices distracting you?”

“Just thoughts, you know, plus some added insults.”

“You’ll have to take all your meds eventually.”

“Then they’ll have to switch me to a different pill, even if it’s less effective.”

She sucks the top of her pen and looked down at her clipboard. “So,” she starts the formal intake. “What brings you here to St Raphael’s?”

The voices break in there, again, confusing me. When I can get my bearings I tell her what made me transfer from Norwalk Hospital and why I opted for shock treatments. She takes a closer look at the mark of Cain I’ve burned into my forehead, writes something, then corrects me.

“We like to refer to them as ECT here. ‘Shock treatments’ brings to mind  the terrible procedures of the past. These days you feel nothing, you just go to sleep and wake up gently. I know. I assist at the ECT clinic.

“Oh, I know, I know. I’ve had ECT before. I know what it’s like and it’s a snap. I asked for this transfer because I hope it will help again.”

We talk some more about why I’m here and what I’ve been through and the voices keep to a minimum so there’s not too much interference. She says she’s going to be my primary nurse and that she thinks we’ll work well together. I nod, thinking she’s pretty okay, for a nurse.

I’ve arrived after lunch, which is served at 11:30am so someone brings me a tray and I pick at it in my room. People come in and out of my room but only speak to me a second or two before they leave, a doctor does a cursory physical, someone takes me down the hall to weigh and measure me. I return to my room, too scared to do otherwise, constrained by the Rules of the voices. The first break in the afternoon is medications in the late afternoon, when someone tells me to line up in front of a little window near the nurse’s station. When it’s my turn, I look at the pills in my cup. Ugh, 20mg of Zyprexa, an increase, plus a host of other pills I can’t remember the names of. I hand the pill back to the med nurse. I’m not taking this, it makes me fat, I say. Give me Geodon. at least I don’t put on weight with Geodon.

“Sorry, Dr Kroeder has ordered this one. We can’t just go around changing doctor’s orders. You either take it or you refuse.”

I was in a quandary. I hadn’t even met the doctor and already I was fighting with her? Should I take it and argue with her later? But then I’ll eat my whole dinner tray and more. Better to start off with my principles intact, so she knows what I’ll take and what I won’t take. I hand the pill back. ”Sorry, I won’t take it.”

“If you decompensate further we will have to give you a shot, you know that, don’t you?”

“I’ll be fine.” I do a little dance step.

“Yeah, and look what you’ve done to your face. Come closer.”

Wondering what she wants, I lean in gingerly, fearing her touch, but she only takes a tongue depressor and smears some ointment on the big oozing sore.

“You’re done.Go eat some supper.”

At 4:30? That’s pretty early. I can’t cross the threshold of the dining room, the Rules the voices make forbid it. I cannot enter the milling crowd, suffering little electric shocks every time my body makes contact with another. Instead I retreat to my room. Sitting on the edge of my bed again, I wonder what to do. How can I get supper, or any meal, if the voices won’t let me go into the dining room?

Just then, the thin blonde nurse with the glasses, what’s her name, leans into my room. “Aren’t you hungry? There’s a tray for you waiting outside the dining room.”

“They made a rule I can’t eat with other people, and I can’t get in the dining room…So I can’t eat.” I read her name tag. “Prisca.”

She smiles and glances down at the tag on her chest.  ”Oh, just call me Prissy, everyone else does. I hate it, but what can you do? What are you talking about? There’s no such rule. For now, I guess I’ll let you eat in your room, but that  is against the rules and we’ll have to get you into the dining room eventually, whatever the voices tell you.

She brings in the tray: white bread with two slices of bologna and a slice of cheese tossed on top, a packet of mayonnaise, a small green salad in a separate bowl, with a plastic slip of French dressing, and a packaged Hostess brownie for dessert. I didn’t eat lunch, though they brought it in, so even this impoverished repast looks good to me and I eat everything, despite not having taking the hated Zyprexa. I curse myself for it, of course, and do some  leg lifts and crunches for exercise afterwards. Ever since I’ve been refusing the drug, I have lost weight. Now I am down to 155 lbs from 170 the last time I weighed myself and I intend to get much thinner, since I started at 95 before medications over the years slowly put weight on me.

After supper the voices start in again, louder and louder, telling me how fat I am, how disgusting and terrible I am. I notice the clock hanging on the wall, which ticks audibly punctuating each sentence. The voices were carping, now they are threatening, and demanding…Finally, their all too familiar sequence segues into telling me I’m the most evil thing, and they don’t say person, on the planet. I’m the Ogre that ate Manhattan, I’m Satan, I’m a mass murderer, I killed Kennedy and deserve to die, die, die!

I’m wearing a heavy pair of clogs with wooden soles and almost before I can think about it, I know what to do. I heave one up at the clock, hitting it dead center. It crashes to the floor. Scrambling to grab a shard of the clear plastic cover before the staff comes running in, I lunge towards where I saw the largest piece fall, one with a long jagged point. I have my hand closed around it when someone tackles me from behind. He’s not very big and I can feel him struggling to keep me pinned. I almost succeed in stabbing myself, but he manages to engulf my hand with his two and press them closed against the flat sides of the shard.

Other people  crowd into the room now and they pry the shard from me and grab my arms and legs so I’m completely immobilized. Then at a word murmured by one of the male aides who have materialized out of nowhere, they swing me up onto the bed, like pitching a sand bag onto a levee. I scream but they ignore me and strap my ankles and wrists into leather cuffs which have been rapidly attached to the bed frame: four point restraints.

I continue to scream and scream, but nobody pays attention. A nurse comes at me with a needle,  saying it is Haldol and Ativan and proceeds to inject me. Although I am still crying that I want to die, that I’m Satan, the Ogre that ate Manhattan, that I killed Kennedy, I’m the evil one, the room then empties, except for a heavy-set café-au-lait sitter, who hollers louder than I do that her name is Caledonia. She pulls up a chair in the doorway, pulls out a cosmetics bag and proceeds to do her nails in spite of me.

I am told by Prissy that I scream most of the evening and keep the whole unit awake until given a sleeping pill and another shot. All I remember is restless twilight sleep coming at last, broken when a short sandy-haired woman, dressed in a sweater set and skirt, comes in and takes my pulse. I’m groggy with medication but she speaks to me nonetheless.

“I’m , Dr Kroeder, your doctor. You’ve had a bad night I see. Well, perhaps tomorrow we’ll get a chance to talk.”

“Get me out of these things!” I mumble angrily. I can’t sleep like this!”

“”Not yet. You’re not ready. But try your best to sleep now. We’ll re-evaluate things in the morning.”

Then she turns and is gone.

As I get to know her, I will like Dr Kroeder for her kindness, toughness and honesty, but I will hate her too for opposite reasons and it will be a long time before I  know whether the liking or the hating or something else entirely wins out.

The first thing that makes me know ECT is going to be different at St Raphael’s than where I had it before is that we all have to get there on under own steam rather than travel in wheelchairs, the way I’ve known since childhood all hospital patients must travel. We walk there, all of us, down interminable corridors, around several corners, through doors to more of the same. In short by the time we get there I have no idea where we are.  I said it was a snap when I had it before, but now I feel like a prisoner going to the hangman, a “dead man walking.” Something about our going there in a group voluntarily, by choice and yet somehow not totally by choice, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. When we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us, no time to anticipate or fear what is ahead, we have to wait and wait and wait. We’re told the outpatients have to be “finished up” first. My apprehension grows. I’m used to getting to the ECT rooms and immediately climbing up on the table and getting it over with. Waiting and having time to think about it brings me close to tears.

Finally four in-patients are to be taken. I think the nurse calling us in senses I am too anxious to wait any longer, for she makes sure I’m with the first group. I clamber up on the table, and see Dr Kroeder looking down at me, smiling. I notice how white her teeth are and the little gap in her shirt across her chest as she bends over me, strapping something over my forehead as Prissy puts a needle into the heplock already in my arm. I feel my arms and legs quickly cuffed down by others in the team, a mask clamps down over my face and I’m told to breathe, breathe in deeply and I breathe and breathe and a chasm in hell opens and the demons reach out and scream as I plummet past into a terrible inky blackness…

I wake up a second later and immediately vomit into a kidney basin hastily held out by a nurse. “Why didn’t you do it?” I cry out, confused. “Why didn’t you do it, why did you made me wait? I can’t go through this again!”

Strangely, Dr Kroeder has disappeared, and so have Prissy and the nurses that had surrounded me just an instant before. Instead a plump, baby-faced older nurse smiles as she takes away the kidney basin and says, kindly, “You’ve been sleeping  soundly for an hour. They did the treatment already and you’re waking up. How about trying to sit up now?” Slowly, I push myself to a sitting position and swing my legs over the edge of the table. No dizziness, no more nausea. I feel okay, except for a slight headache. So I slide off the table and ask where to go. Surely they won’t make me stay a long while this time. The nurse leads me to a wheelchair and asks an aide to take me back to the unit. Ah, a chair at last. At least I’m not expected to walk on my own after that ordeal.

ECT Takes place on Monday, Wednesday and Friday each week and though I vomit many times upon waking up, that is the least of it. What I dread most is the anesthesia, how I plunge from perfect alertness into the dark pit and feel like I wake a second later, sick and confused. I grow more and more afraid until, at the end of a series of 8 sessions, I refuse to go on to a second series. I thwart this by grabbing something to eat every morning, which is forbidden as you cannot have ECT if you have eaten or drunk anything within 12 hours of hte procedure. Because my symptoms are still severe and Caledonia comes to sit with me one to one more often than not, Dr Kroeder tries to persuade me, but I am adamant. I am not depressed (quite despite what she tries to convince me of). ECT hasn’t helped my obsessive intrusive thoughts/hallucinations this time so no more of it. No more! Then she threatens to have the next series court-ordered  and to add insult to injury, she says she will force me to take Zyprexa as well, the drug I so hate. I explode.

“What! You f—ing can’t do that! I’m a free citizen, I’m not a danger to myself or anyone else.”

“In fact, I can do it, and I am going to do it, whether you like it or not. You need more ECT and unfortunately you refuse the only drug that is effective for you. Pam, look, how can you say you’re not a danger to yourself? Look at your forehead! That’s not the mark of  I  it’s just self-mutilation. Look at where you carved that mark into your hand when we weren’t watching you carefully enough. Isn’t that danger enough?”

“But I’m NOT going to kill myself. I don’t want to die. I just want to be disfigured so no one will want to be around me and they’ll stay safe and uncontaminated.”

Dr Kroeder’s eyes suddenly glitter and she has to blink a couple of times. “Well, I’m not going to let you continue to do what you want. Period.”

She was standing at the foot of my bed, one foot on a lower rung, casually holding a clipboard. But she moves closer to me, standing to one side, the clipboard clasped business-like across her chest. Gazing intently at me, she shakes her head in what appears to be sadness.  I’m not sad, I know what I have to do. I don’t understand why she feels this is so terrible, but I know enough to remain quiet. Finally, she turns and quietly slips out of the room.

This alarms me; it shocks me. I know she means what she says. Worst of all, Dr O’Maloney, my outpatient psychiatrist, has signed off on it well, agreeing  it is the only thing left to do, that already I’ve been in the hospital two months and little has changed, that the situation is desperate. Their only problem is that to get a court order they have to get me a conservator who will agree to it. They want to appoint my twin sister and they discuss with her whether or not she’ll agree to forcing more ECT on me, in addition to Zyprexa. Despite fearing that I’ll hate her, she too is convinced there are no other options.

So Dr Kroeder wins and I endure eight more ECT sessions. Finally I’m discharged a month later, much improved, so everyone says. As a condition of my release, I promise that I’ll continue to take Zyprexa. Forced to, I do promise, even though my history clearly suggests that I will not.  I’m also supposed to return once every two weeks for maintenance ECT treatments and Dr Kroeder threatens me with a police escort if I don’t comply. But this time I thumb my nose at her. So, she’s going to get both the Hartford and the New Haven police involved? She thinks they are going to bother to arrest me just to drive me down to the hospital for ECT, something they themselves probably consider barbaric? J’en doute fort. I doubt that big time! In fact, after a call to the Legal Rights Project, I learn that any conservatorship was dissolved the moment I was discharged from St Raphael’ s and that the doctor has no power over me at all now, zilch. So I write Dr Kroeder a nice apologetic letter — sorry, doc, but no more of your ECT for me. Ever.

Several months later, hearing command hallucinations, I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of shock torture, excuse me, electro- convulsive therapy.

————————————————————————

Addendum: not part of Blacklight

ECT in 2003 (after DIVIDED MINDS ends)

The first time I had ECT was in 2003 at John Dempsey Hospital, which is connected to the University of Connecticut’s medical school. There, in desperation, because of an “obsession” — and I say that advisedly, because I was not so much obsessed as consumed — with the face  that I saw in the biohazard sign (which we  called the biohazmat man in DIVIDED MINDS) as well as a little red figure I saw running through it, I asked whether something like ECT might help me. The head psychiatrist of the unit wasn’t certain, it wasn’t commonly used for that. But he was willing to try it nonetheless. It took some doing. I was very scared, and the procedure scared me even more, as it turned out that a “heplock” had to be placed in your arm hours beforehand, so a needle could be easily inserted and anesthesia given later during the procedure. But this frightened me and I balked. I also balked at signing various papers. I almost backed out, and rescinded permission at least once. But finally I went through with it.

The actual ECT was near torture, both because of my terror of anestheisa and also because at Dempsey Hospital absolutely no attention was given to the comfort of in-patients, so that we were made to wait until afternoon before our treatments, meaning that we could eat neither breakfast nor lunch on those days. Or at least we could not eat until the treatments were given. Since meals in-hospital loom large in importance, especially when there is little else to do and one’s medications induce hunger, this was a huge problem, particularly when I was already very apprehensive. I never did understand the rationale behind this. It seemed to be particularly bad planning to have any ECT patient have to have treatment so late in the day, given that fasting was essential. But hey, who was I but a mere mental patient? I had no rights, I just had to do what I was told!

Anyhow, I suffered the agonies of hell, but I went through with it, hating each session, until, after I’d undergone five of them, I began to complain that my memory was being affected. I decided to stop, but I noted at the same time, strangely enough, that the biohazmat man had also disappeared from my radar. Weird! It seemed to have worked, ECT had broken the back of what had been consuming me. In point of fact, ECT at that time worked so well that the biohazard sign has never bothered me again in such a fashion. Which is close to a miracle in my book.

Memory is Fiction and Fiction, Memory

Where is Memory?

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).

Artwork from Hospital

If the window is open, what does the mirror outside see inside the room?

As may be obvious from the brown paper at the sides, this collage is very much unfinished, both as to content and as to medium. What I mean is, this is a kind of painting with paper, so I am so far dissatisfied with, say, the blue curtain with yellow lining, because it still looks rough and is not clearly a curtain blowing in the air coming through the open window. Ditto, the open window, which is not clearly even a window, except by virtue of my titling it such. But when I finish with it, I hope all these mysteries will be clearer, including the surreal placement of a hand mirror outside an upper story window! (I said it was surreal, didn’t I?) But what I cannot help is whether or not the viewer recognizes what it is that is on the bed. Some people simply do not know what restraints look like, and have variously interpreted them as guitars or snakes or what have you. To me, it is obvious. But I guess most people have not been in such a situation, and have no conception of what they might be looking at. Perhaps a more suggestive title would help?

Another important feature of the “painting” is the frosted glass window, with the mysterious something going on behind it, again left up to the interpretation of the viewer. If you understand that this is a restraints bed, and that the window is open…what could be going on outside the seclusion room? And why is the window open? Should the bed be empty? If you could see this very large collage – 5 feet by 5 feet — up close, you would see that the mirror overhangs a very detailed garden, with all the trappings of well designed backyard floribundance, so to speak. There is a little table and benches and other accoutrements, but also a path leading up to — a garden gate, which opens onto a field and freedom.

As I worked on this collage, I was in a state of acute anxiety — with tremors and shaking and palpitations I did not understand. And every night I would weep with bodily but not conscious memories of the recent brutalities I experienced at Manchester and Middlesex Hospitals. At Natchaug they understood how degrading and traumatizing such treatment had been, and indeed how re-traumatizing. Because indeed, I had already been traumatized many times before in the 80s and 90s and early to mid 2000’s by what I thought was SOP use of such measures. Instead, when those recent hospitals used them,  cruelly and inappropriately, at a time when I knew their use was frowned upon and had been severely curtailed, it not only re-awakened the original trauma, but in a very real sense put me in emotional touch with it, the pain, the terror, the horrendous humiliation for the very first time.

I am not by any means over it. As I work on my memoir sequel, BLACKLIGHT, I am also slowly going over my hospital records with Dr Angela, aka Dr C, and it is a gut-wrenching task that leaves me drained and tremulous. But if it succeeds in returning my memories to me, all of them, I shall consider it worthwhile.

Schizophrenia and Traumatic Treatment: Continued Use of Restraints and Seclusion

Please note: For my final take on what happened at Middlesex, please jump to this link: https://wagblog.wordpress.com/2012/05/15/useless-psychiatric-mediation-and-a-poem/   (added in September 2012)

First, before I start my post today, I wanted to share my newest artwork, which is a colored pencil “painting” of a woman who lives in my building, whom I will call Rose. She did not ask me to paint her; she was simply someone who sits quietly for many hours in the community room, and so was a good subject for a portrait, and a photo. I also happen to find her a very agreeable person, one of the nicer ones here (most are gossips and backbiters, or if not most, then the most vociferous and visible of the residents). I think she will be quite pleased with how it turned out, so long as she does not expect anything but a portrait that is faithful to life, rather than an idealized one. I believe, however, that Rose is very down to earth and knows what she looks like, and will appreciate what I have painted.

Rose, intent on her needlework
Rose intent on rugmaking
Rose comparison of painting with photo

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Now I want to discuss, yet again, the use of restraints in Connecticut psychiatric units, particularly as it pertains to my treatment there. As I recall, I have not gone into much detail about the last hospital stay, back in April and May, largely I think because it again was so traumatic and in many ways similar to the previous one, that I could not bear to contemplate it.

However, as very little as I recall, I do remember more of the stay than the complete amnesia I still experience for the stay in Manchester, back in October or November of 2009. When I say I have a loss of memory with regards to this other hospital stay in the spring of 2010– in Middletown — I meant it more for the specifics of certain episodes. And for any of the people there who staffed the unit. (Except for Christabel the OT).  With regard to much that occurred I believe a lot could be brought back to me, under the right circumstances. I do, for instance, continue to have an overall memory of what the place looks like and where my room was and some details about what happened. What I do not, and did not remember, not even the next day, was most of what precipitated the use of restraints and seclusion during this stay. Or at least, of the two or three incidents of S and R two are jumbled together, so that it takes some mental probing for me to straighten out any of it. but one incident remains too clear in my mind for comfort though even at the time, or immediately afterward, as well as now, I have no idea what was the actual precipitant.

Anyhow, what I recall of  that episode is this: I had been taken off Geodon, which I took regularly with my  Abilify up till then, both in order to boost its antipsychotic properties as well as to temper any Abilify-induced irritability. The irritability was physical as much as mental — and with the resultant tendency to get into verbal fights and arguments with anyone who, as my mother used to put it, looked at me crosswise. I have no idea why they did this, took me off Geodon, given that I know I explained the rationale for the use of two antipsychotics. But many MDs seem to find this objectionable, however effective. Perhaps they considered the 20mg Zyprexa, which they had talked me into taking on an acute basis, would be an adequate substitute for the calming effect of the Geodon. They had wanted to stop the Abilify, too, using Metformin, a diabetes drug, for weight control, but I had insisted on taking it both in an effort to combat Zyprexa’s tendency to cause weight gain, but also because I believe that it is the Abilify that has so massively enhanced my creativity.

So there I was, on Abilify untempered by Geodon, and taking Zyprexa, which induces its own “upsetness” when my weight invariably increases…I assume that I must have been hostile, loud, and disruptive, for I do not know why else they would have made me go into the seclusion room. I do remember that I could not calm down, and that in the flimsy johnnies they had clothed me in, I was freezing, so that even when the nurse doing constant observation told me to lie down and rest, I was unable to do so for all my shivering. I begged for a blanket, but no deal. I pulled the entire bare mattress over me as a covering. Well, this was apparently seen as a self-destructive act, or something, as immediately they pulled it off me and dragged the mattress itself from the room. Now I had nothing for warmth, except my own anger at having been treated  in such a fashion.

I remember that I was yelling a lot, and that I wouldn’t lie down on the cold linoleum and “calm myself.” No, I wanted to talk, and begged the nurse to do so. Instead, she only turned away and told me again to lie down on the floor. Well, this enraged me, and I went to the door to complain again. She said nothing, only stood in front of the open door so that I could not leave. Finally, getting no response, and still anxious and “het up” I suppose you could say, or over-activated by the Abilify, I tried to push my way through her into the opening. Immediately two “guards” pushed me back into the room. I yelled at them, and pushed back. One of them asked me what was wrong with me, why I didn’t just ask to talk with the nurses instead of resisting physically…I looked at him and said that I did ask to talk, and she refused. He seemed somewhat surprised by that. Nevertheless, he ordered me to go back into the room and lie down.

I was having none of this dictatorial behavior on their part, and as I recall, at one point — no, I do not remember what happened. I only know that suddenly the guards were on top of me, and one had pinned my arms behind my back and was pushing my face into the linoleum floor. It was as if I were a recalcitrant inmate of a prison and this was a cell “take-down.” I was hurt and I was furious.

When they let me up (and why they had pinned me to the ground I have no recollection, only that when they let me up, I was finally allowed to talk to the nurse nad stand out in the hall with her. I heard some talking behind my back and a commotion, followed by feet going down the hall away from us. I had a bad feeling about it, and asked the nurse, “What are they doing?” She responded, ominously, “They are preparing a bed for you.” “a bed? what sort of bed? She remained silent and I understood that they were putting restraints on my bed…”You can’t restrain me, I am out here calmly talking to you. You haven’t even offered me a PRN and I will tell you now that I would be more than willing to take one. But I am NOT a danger to myself or others, and you cannot legally put me in restraints.” The nurse continued to remain silent. My heart began to race. I called down the hall, “I will not let you use restraints on me, I am calm and this is not allowed.”

Some of the staff approached me and told me to come down to my bed room with them. I complied, because I knew that if I didn’t they would have some reason to say I “deserved” to be restrained. When I got to the room,   I found I had been correct: there on my bed were the straps and shackles of four-point restraints, attached to the bed frame.

“I am calm and I am not a danger to myself or others,” I carefully declared. I will take medication and I do not need restraints.”

“Lie down on the bed, Pamela” someone told me. I refused, saying that this was punishment pure and simple and that they had no cause to do this nor any legal right. “I will ask you one more time to lie down on the bed, Pam, or the security team will help you do so.”

At this point, I understood that they were going to use this form of discipline on me no matter what I did. That they were out to get revenge and that they would use any excuse to excuse such measures. So if I “made” them force me into the restraints, that would by itself prove that I “deserved” them. So, more humiliated than I believe I have ever been in my life, I sat down on the bed, then lay down on my back and said out loud, “I am now placing my limbs into four-point restraints, and I want a record of the fact that I am calm and not resisting and that I have asked for a PRN instead.”

It was no use, though, as they went ahead and shackled me, then left me alone in the room, except for a staff member monitoring me through the door, left partially ajar. My heart was racing with rage, and I could feel the pain of such profound humiliation surging through me. But I did and said nothing, I think, because I was going to prove to them that the drastic measures and punishment they had inflicted on me was WRONG. After about an hour and a half someone came back and let me out. I was neither compliant now, nor placated and as soon as I was free and out of that room, I let it be known, loudly  that I intended to file a complaint. But no one said a thing, no even spoke to me the rest of the night…

THAT is what I remain so traumatized by, at least with respect to  this time: the utter humiliation of what you might call “cutting my own switch,” along with the clear understanding — even mutual acknowledgment — that they were punishing me.

This continues to preoccupy me, that is when I allow myself to think about it, or when I continue to try to read the records of that stay, which records I only a week ago obtained (having sent for them many weeks ago…). I cannot help but re-experience the same brutality and the same extreme and exquisite humiliation, and once again it hurts beyond belief. The worst thing perhaps is that when I told my family about what the staff had done to me they didn’t come to my support, they didn’t unconditionally defend me. They didn’t even  seem to care, or to believe, that I had done nothing to “deserve” four-point restraints (as if anyone deserves them). Another family would have automatically come to their member’s defense and declare that NO one deserves such brutality, and that as their family member I should never have been treated that way. Another family would have done  –oh forget it!  No, my family is always so eager to please the staff and to believe that I am in the ‘wrong” at these hospitals, to believe that I am at fault, (this is the story of my life!) that they simply told me I must have caused their use of such brutal methods of control by my own behavior, I surely deserved it, and besides “what else could they do?” Shackling me, calm and rational, me to a bed was clearly the only option and entirely justified…So much for MY family’s loyalty and compassionate support, huh?

Well, bitterness solves nothing, so I won’t dwell on the last subject, but I will say that if I can, I intend to file an unoffical complaint, or barring that, an official one. The problem with the latter is that I will not then be able to confront my persecutors. whereas if I did so unofficially, it might yet be possible, if only to avoid a messy public affair. After all, I could easily write something…No, I won’t go there. For now, I only wanted to describe what continues to occur at Connecticut psychiatric units, despite the regulations and general disavowal of the use of cruelty in the treatment of those with mental illness. It still goes on, it just happens behind the closed doors of the hospital and the continued use pf seclusion and restraints as discipline and as a salve for frustration, depends on the assumption that no patient will bother, after the fact of discharge, to do anything about it, except try to forget.

Things are better than this, but do not feel it!
Note the linoleum and bare mattress. I have never seen a windowed seclusion room!

Seclusion and Restraints: Observations from the other side

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Seclusion and Restraints: How it feels

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

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

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

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

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

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

————————————————————————————

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

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

 

Hospital, Hypomania and How Hope Eventually Returned…

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

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

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

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

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

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

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

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

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

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

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

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

On Writing and Memory

I am trying to start a new book, another memoir. This is an exciting endeavor but I’ve gotten stuck on the problem, a perennial one I imagine, of how much does one really remember, and how much does the mind “make up,” that is, remember improperly? I know that some writers of autobiography — to my mind a more stringent form, requiring research and some historical context –and memoir make the claim that every word they have written is factually accurate, to the extent that they have checked each one against the memories and records of others. Then there are the infamous ones who have played so fast and loose with the truth as to have lost all semblance of it. These have produced literary scandals (as well as books that probably earned their authors much more income than if they had actually stuck to the facts) and more or less short-lived discourses by the punditry on the nature of truth and memory: what can we really know? Since I am something of a sucker I tend to take both of these at their words, when in fact I daresay that neither of them ought to be. True enough, the one has done more work than the other, and has made an honest effort to search for the “real facts” in his or her history, but my question is this: Can it be done, one, and two, why should the collective memories of say, ten people chosen by the author (biassed) be more “objectively real” than the simple truth of what the author herself remembers? Yes, you might build up a larger group of pieces-of-the-elephant if you have ten blind people who feel only one part. But unless you have someone who knows how the pieces fit together, you still only have elephant pieces…And so ten pieces are no better than the one in the end.

What I am saying is this: the author, the person who lived the life has to be the one to make sense of it. She might have a thousand “elephant pieces” — memories given her by ten people, yes, or only her own memories but in the end she must construct what the elephant – her life–looked like out of them. In some sense, there are facts and there are facts, but the work, and the life, and the living is all in the interpretation; always was and always will be.

That said, I am having trouble getting started, because I don’t know whether I want to use more “objective” sources or evidence this time, or not. I am perfectly comfortable using what is close at hand: my journals, my photos, the people I can easily consult. And I do feel very uncomfortable with mining deeper records: I do not particularly want to see what is written on my hospital charts during months-long stays when I was ranting and screaming for days, or engaging in outrageous behaviors like taking a dump on the floor of the seclusion room, or disrobing and…I can scarcely bear to think I did such things, frankly, and do not want to read what was written about me at the time, knowing nothing can be corrected or updated to show them the “new me”. A sad fact about hospital records and workers: they only see you when you are at your worst; they rarely get to know if you get better. Much less get to know you when you are well. And if you ever wanted to sit down and tell them what was actually going through your brain at the time they believed XYZ, but in fact QRS was happening, well, forget it.

So, I am loathe to overturn those stones, growing mossy as they nearly are now, some four years later. It pains me even to bring my mind across the memories of them. I have no wish to flagellate myself. My own journals say little, but it’s about all that I want to know. At the same time, my own brow-beating conscience tells me, NO, you must do what you do not want to do. The very fact that you do not want to do it means that you should. No pain, no gain—

Oh, I just go on and on. I would make this next book a torture to me, nothing of pleasure at all, just to serve my scruples. Be gone! If the writing is only to torture me, why do it? I’d be better off with my artwork and sculpture. But writing nurtures me, so long as I do not let my illness turn it into a punishment. Is there any need for me to use the historical records in telling the tale of my life? Did my first book lose anything in my not doing so? I would change a lot in DIVIDED MINDS, if I could go back and do so — add scenes here, take out one or two, most certainly make better transitions — but except for appending a much clearer discussion of this very issue, and also a better disclaimer, I wouldn’t change the way we wrote it.

So I might have talked myself to a place from which I can start, allowing myself the freedom not to have to delve into the official records or consult professionals involved in my care unless I am currently in treatment with them.

Your past after all resides as much in what you remember as it does in anything documented. You are mostly what you remember, and what you remember is sculpted by time and changes over time. If you think your memories remain the same, read back in a diary you haven’t read before, and recover the accounting of a incident you thought you’d recalled with accuracy…You’ll see how inaccurate your “memory” was and how formative this memory had been nevertheless. Then remember that the accounting is itself a memory, tainted by emotion and interpretation and consider those “ten people with their elephant pieces” who tried to give you objective memories of your history. Were they truly objective? Were their memories, even collectively, any more factual and objective than your memories?

In the end, memory is fiction, as someone once wrote in The New Yorker magazine, memory is, well, made up, not real, imagined. I agree, but it is all we have. Literally. Without memory we would be without anything at all, no culture, no civilization, no nuthin’. So let’s not pretend that the fact that memory is fiction isn’t critical. We need memory, and memory is, well, fundamentally untrustworthy, which is why we need thinking, and thinkers and writers to interpret history and memory… Memory is the most important thing we have, the most important attribute we can impart to anything: in almost every sense of the word, when we remember something we keep it alive. Maybe not literally, but then again, it is memory that keeps a conversation going on longer than five minutes. If you forgot what you were talking about ten minutes ago, or to whom you were speaking, nothing much would get said…