Category Archives: Reflection

Award-Winning Short Story — 1 page — and art

THE DRESS

by Phoebe Sparrow Wagner (formerly Pamela Spiro Wagner)

I will never forget The Dress. Worn only once, with three quarter-length sleeves cuffed in white, and a demure white collar, it had two layers of navy blue crepe skirting, with a dropped waist and a sash. This was the first “dressy” dress I ever picked out all on my own.
The first thing about The Dress was that it was not the pale pink tent that I had worn to my first mixer with Sheffield Academy, which I was convinced scared away my freckled red-haired date, not that I minded much, once I saw him dance. The second thing about The Dress was the look in the eyes of the boy at the Gunnery, where my second mixer was held. This boy was matched with me strictly by height. I don’t know why, but something clicked with us, and the first thing he said to me, to my huge relief, was, “I hate dancing, don’t you? Let’s take a walk.” With that, we linked arms and spent the evening strolling arm in arm around his campus.

To say that nothing happened would seem almost hilarious these days, except that nothing did, besides our shared and passionate discussion of Plato and the books we’d read and other schoolish stuff. By the time the bells rang to call everyone back to the buses, I knew, because after all, I was a teenage girl who had read books, what might happen. I also knew, because I was an avid fan of the advice columnist Ann Landers, that no self-respecting young girl allowed a kiss on her first date. We had been walking arms around each other’s waist all evening; I liked him, it was equally clear that he liked me. It was inevitable what would happen next. But I was a good girl. What to do?

I tried to say good-bye, smiling sadly and keeping the distance that would protect me. My adoring young man nevertheless leaned in to kiss me. Turning my cheek, I rebuffed him. I did not mean to hurt his feelings, but I knew that Ann Landers was watching me and would be happy my virginity was safe. As I climbed onto the bus with a heavy heart, I looked back and waved but my date was nowhere to be seen. I took my seat, feelings mixed about whether the rebuff had truly been a success.

Then someone behind me spoke. “Good for you, Pammy, not kissing the black boy!”

What? I looked at her. My classmate was smiling grimly. “You didn’t kiss that -–“ and she used the terrible word I had never heard anyone say to my face.

In that moment, I knew that if I could have, I would have raced off the bus and grabbed that young man and kissed him full on the lips, and to hell with Ann Landers and her crappy advice.

But it was too late to change anything. Too late to let him know why I had not kissed him, too late to kiss him in spite of my classmates and too late to spite Ann Landers and my proper upbringing. Too late, too late, too late. I never wore that dress again.

—————————-

This short account, all too true, won first place at Vermont’s Counterpoint’s annual writing contest in 2015. You can see it and the other first place winner at

https://www.vermontpsychiatricsurvivors.org/wp-content/uploads/2012/10/Counterpoint_Summer_2015.pdf

Below is my very first painting done in about 2009 or 2010 when I was first starting to do art. I called it First Love, and now you know why.

First painting ever

MORE than just my Review of CREATIVE MARK Squirrel LE Brushes and Set

Originally submitted at Jerry’s Artarama Art Supplies

A limited edition series of CREATIVE MARK  fine blue squirrel hair brushes! For centuries, natural blue squirrel hair has been one of the most cherished hairs for making high quality artists’ paint brushes. This traditional hair is extremely soft and highly absorbent, and offers several advantages over modern…

Horrible, worthless brushes….

By PamWagg Artist from Hartford, CT on 1/6/2013
1out of 5

Pros: Fails To Glide, Rough, Stiff, Fails To Hold A Point

Cons: Poor Quality

Best Uses: Maybe Not Even For Glue, Maybe For Glue

Describe Yourself: Artist

Primary use: Personal

Was this a gift?: No

As an artist I need good brushes for all my work, and I invest in them, so when I saw these, I thought it would be a good thing to try them out. Unfortunately they were definitely nothing like the packaging asserts. Not at all. All I can tell you is that you have to say NOT to every single promise, including believing that these are even made of natural blue squirrel hair. NOT “soft and absorbent, hold lots of color.” NOT “handmade” NOT “round shape with fine point”. The tips are waxed into a pointed shape and you have to literally break off the coating to use them at all, but then you have a brush without any shape whatsoever, never mind a fine point. The brushes are quite literally worse than the cheapest department store brand. DO NOT BUY THEM. You will be wasting your time and anything else you expend on them. Jerry’s sells VERY good brushes, but these are not they.

I rest my case…

thumbnail

Tags: Unusable, After one use, Picture of Product

proof that these are Creative Mark brushes

thumbnail

Tags: Picture of Product

I wrote this review at Jerry’s site, but I wanted to add since I did write it, that the packaging pretends that these brushes are, and I quote, “entirely handmade”  — the brush head is “hand-shaped and tied” and yadda yadda yadda.. But how can this be? Do they really expect us to believe that the metal ferrules were individually metal-worked? And the wooden  lacquered handles, that is, painted with shiny paint, were individually painted and for that matter carved by hand? NOT! NOT! NOT! I do not for one second believe any of it and it bugs me that they think that they can get away with it. These brushes were NOT entirely hand-made, that is just plain masculine cow flops! I wouldn’t even give a hoot about the lies, if the brushes were decent but the idea that they could call this set worth  nearly $70 or so, for 6 brushes, and then pretend to drastically mark it down for a once in a lifetime CHristmas sale just burns me. They are and always were crap. And they knew it. They know it now. I don’t get it. Why are people so dishonest. Wouldn’t they rather put out a decent product for a decent price and have some pride in what they make? People would buy it, then, and not complain.

But no, they would rather CHEAT people, once, but a lot of people. Once. Than have a limited number of repeat customers who were loyal to a good and trustworthy manufacturer. Oh, I will get off my soapbox but this sort of thing just disgusts me.

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

To Kill or Not to Kill: Physician-Assisted Suicide?

 

My brother visited me recently and for some reason we got into a discussion about whether or not we supported physician-assisted suicide. We differed on the fundamentals: Phil, aka Chip, supports assisted suicide in every sense of the word. He thinks that it should be legal for a physician to prescribe a lethal medication essentially for anyone who asks.

 

This horrified me. Wait, he went on to explain. In his opinion, everyone should have to push a button upon waking in the morning in order to stay alive. If you failed to push it, you die. Meaning that the day would begin with everyone choosing to live, thus having to take responsibility for making that choice. We would start with the premise that every person who “wakes up alive” has chosen to live and cannot claim rightly to be suicidal…I guess that Chip as a psychiatrist, feels too many of his patients do not want to live, but also do not sincerely want to die, and he thinks that they need to acknowledge the latter. That might be good, but I also know that there are those who are so depressed that in their involuntarily mentally incapacitated state, they might not be able to press the “I want to live” button, and thus would die, even though in a healthier frame of mind, they would have chosen to live…

For me, I agree that when terminally ill, a person should have the right to end his or her life, and should be able to do so without interference from authority, legal or medical. I also think that in certain cases, palliative or hospice care helps with this, and already has done, silently and as it were secretly for years: the administration of a sedating dose of morphine when the time is right goes a long way towards assisting a person’s “dying process.” Not a lethal dose mind you, but a dose to “ease breathing” and one from which the physician and all witnesses understand the person will likely never awaken.

(My friend Joe is another case entirely. They turned off his ventilator and dosed him with morphine after 4 years with ALS. I firmly  believe that they murdered Joe outright, against his will…But no more will be said of that at the present time.)

 

On the other hand, let’s face it, if you really want to commit suicide, it is easy to do so if you are able-bodied and not terminally ill: just jump in front of a bus, or out of a tall building’s window. There are a dozen sure-fire ways and they have been used for millennia as an easy way out. The problem is for those who are physically so debilitated that they literally cannot “jump” or swallow the pills or whatever. Yet  unless they are forcibly nourished and hydrated through a feeding tube, they can always refuse food or liquid, which it seems is not agonizing after all. That is according to what recent research and personal witness (my own) have indicated. When my friend Lynn L died – essentially from not a refusal to take liquids– she did not suffer acutely from deprivation but seemed slowly to cross into a never-never land. She simply drifted off to an endless sleep and passed away.

 

The idea that a physician could freely prescribe an overdose of a lethal drug to any someone who came asking for it, that just strikes me as the height of 1) irresponsibility and 2) cruelty, by someone whose job, after all, is characterized by the Hippocratic Oath: primum non nocere or “First do no harm.” If killing  a patient is not doing harm, then I do not know what is. I simply do not understand how bloodying one’s hands in the act of killing, no matter how good one’s intentions, cannot but badly affect any so-called healer.

 

Surely there are other ways to deal with a person’s pain and suffering than to throw up one’s hands and say, well, I cannot help you feel better or live longer, so I will simply shoot or poison or – whatever – you so you feel nothing and don’t have to deal any longer.This completely disregards the inherent value of the struggle itself, and the promise of something worthwhile, if only at the very end  at the moment of dying, in having faced the suffering and undergone it fully.

 

Look, I do not like or want anyone to suffer agony in the last stages of life, and am all for morphine use, liberal or sparing, depending on the patient’s desires and needs. But there is no absolute value in complete suffering or pain relief, not in my book. For me, I insist that I must feel my own feelings, and in that quest, I must decide to feel the pain, emotional or otherwise, rather than dull it with drugs or anything else. Yes, it hurts, but the hurt somehow feels better because it is mine and real, and not the forced dull nothingness of being drugged out of it.

 

If you have other thoughts about this, do feel free to share them in the comments section. In the meantime, I found this article on the very same subject at Medscape Psychiatry. It was written by ethicist and psychiatrist, Ronald  W. Pies, MD and may be found in its original form at this link:

 

http://www.medscape.com/viewarticle/771274

Medscape Psychiatry > Ethics in Psychiatry

 

Do We Need ‘Thanaticians’ for the Terminally Ill?

 

Ronald W. Pies, MD

 

Posted: 09/26/2012

 

The Ethical Dilemma of Physician-Assisted Suicide

My 89-year-old mother had been losing ground for some years, experiencing what geriatricians sometimes call “the dwindles.” Toward the end of her life, she was beset by a deteriorating heart; an inability to walk; and occasional, severe gastrointestinal pain. My family got her the best medical treatment available — eventually including home hospice care — and she generally maintained a positive attitude throughout her long downhill slide.

 

But one day, as I sat beside her bed, she seemed unusually subdued. “Honey,” she said, “How do I get out of this mess?” I had a pretty good idea of what she was really asking me, but I deflected her question with another question: “Ma, what ‘mess’ do you mean?” I asked. “It’s all right,” she replied, smiling sadly, “I’ll manage.”

My mother was doing what she had always done: sparing her children from pain. In this case, it was the pain of dealing with the waning days of her life and the frustration of knowing there was no easy escape from the burdens of dying slowly. “Ma, I’ll always make sure you are getting enough treatment for your pain,” I added, taking her hand — knowing that the prospect of unremitting pain is often an underlying fear of terminally ill persons.

 

Yet, unspoken in my mother’s question was the issue of so-called physician-assisted dying, sometimes called “physician-assisted suicide” — an enormously heated controversy both outside and within the medical profession. In my home state, Massachusetts, the issue has come to the fore, owing to a November ballot initiative for a measure that would allow terminally ill patients to be prescribed lethal drugs.[1] A closely related bill (H.3884) has also come before the Massachusetts Legislature’s Joint Committee on the Judiciary.

 

Similar to laws already on the books in Oregon and Washington state, the proposed Massachusetts law builds in numerous “safeguards”: For example, patients would be required to submit their request in writing twice, and those requests must be 15 days apart. As reported recently in the New York Times,[2] fears regarding widespread overuse or abuse of the so-called “death with dignity” laws in Oregon and Washington have largely failed to materialize, at least according to some studies.

 

Nevertheless, the Massachusetts Medical Society (MMS) has long been opposed to physician-assisted suicide. In March 2012, the MMS President, Dr. Lynda Young, testified before the Joint Committee[3] and did not mince her words. Allowing physicians to participate in assisted suicide, she stated, “…would cause more harm than good,” and she argued that “…physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.” Instead, Dr. Young asserted, the physician’s role should be to ensure that the terminally ill patient “…continue[s] to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.”

 

With considerable ambivalence, I agree with Dr. Young. In my view, terminally ill but mentally competent patients should be at liberty not only to refuse further medical treatment, but also to end their own lives — for example, by refusing to accept liquid or solid food. Contrary to a widespread belief, voluntary refusal of food and fluids does not result in an agonizing or painful death, according to a2003 report in the New England Journal of Medicine.[4] Indeed, medical ethicist Dr. Cynthia Geppert informs me that voluntary refusal of food and drink is now considered an accepted approach to dying in palliative care.

 

As Dr. Thomas Szasz has argued in his book, Fatal Freedom: The Ethics and Politics of Suicide,[5] a liberty is not the same as a right, because the latter entails a reciprocal obligation on someone else’s part. (If I have a right to free speech, the state has a reciprocal obligation to protect that right.) Moreover, the liberty to commit suicide does not entail the “right” to have one’s physician prescribe a lethal dose of medication. Indeed, Dr. Szasz believes that “physician-assisted suicide” is really a euphemism for “medical killing” — more technically, “heterohomicide” on the part of the physician.

 

While I disagree with Dr. Szasz on many issues in psychiatry, I think his analysis here is essentially correct. Physician-actuated heterohomicide, in my view, is “fundamentally incompatible with the physician’s role as healer.” I believe that permitting physicians to write prescriptions for lethal drugs will eventually erode the trust that all patients should place in their physicians. More than a euphemism, “physician-assisted suicide” may be a contradiction in terms. And in my view, the very concept violates both the implicit ethical contract between physician and patient, and that between the physician and society.

To be clear: None of this means that physicians should collude in the cruel and unnecessary prolongation of dying, as is often seen in hospital settings. As physician and ethicist Dr. Fred Rosner has argued,[6] “To prolong life is a [commandment], to prolong dying is not.” Thus, in the Jewish medicoethical tradition, “removing impediments to death” is sometimes acceptable — that is, discontinuing treatments that needlessly prolong the dying of a suffering, terminally ill patient, but without actively bringing about the patient’s death. (The distinction between “letting” someone die and “making” someone die was supported in the 1997 US Supreme Court case of Vacco v Quill,[7]which upheld New York State’s ban on assisted suicide.)

 

But what about those suffering, terminally ill, mentally competent patients who will not choose to end their lives by refusing food and drink and instead seek out “assistance” from healthcare professionals? Again, I do not believe that medical professionals should participate in assisting a patient’s suicide. But I sometimes wonder whether society ought to permit somebody to do so.

 

For lack of a better term, let’s call such a hypothetical individual a “thanatician.” Let’s posit that carefully trained and closely monitored thanaticians would be permitted to provide medically screened, dying patients the same type of lethal medication now prescribed by physicians in Oregon and Washington — under essentially the same restrictions and safeguards.

 

But wait: Isn’t this proposal a cop-out? Doesn’t it merely place the moral issue of assisted suicide in the lap of the nonphysician, allowing the dying patient’s physician to shuffle off with a clear conscience? Even worse: Would the use of such death-dealing personnel amount to abandonment of the patient, as Dr. Geppert recently suggested to me?

 

Still other questions arise. As my colleague Dr. James L. Knoll has suggested, might not the training, monitoring, and supervising of thanaticians create more problems and headaches than it would solve? Finally, doesn’t the very notion of “thanaticians” suggest that we have lost faith in what Dr. Knoll rightly calls “the intensely personal journey” of doctor and patient?

 

I, too, struggle with these questions and find no easy answers. I suspect that at present, the best approach to the dying patient is through the skills of the palliative care physician. Palliative sedation, for many terminally ill patients, may be a viable alternative to managing suffering without ending life. Moreover, a careful psychiatric assessment of patients requesting physician-assisted death is always indicated, because major depression may distort the patient’s judgment as death approaches.

 

How we deal with terminally ill patients is a painful topic that I never discussed with my mother, who was fortunate enough to have excellent home hospice care in her final days. But I believe this is a discussion we urgently need to have.

 

Acknowledgment: I wish to thank Cynthia M.A. GeppertMD, PhD, and James L. Knoll IV, MD, for their valuable comments on earlier drafts of this article. The views presented here, however, are solely my own.

 

 

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).

Hospital Abuses: Psychiatry and Authority

STAY AWAY FROM THIS PSYCHIATRIC UNIT
Stay away from this hospital’s psychiatric unit!

Most of what follows below is a cut and paste from past blog posts, plus the latest update, but I wanted to do so in order that newer readers would understand where all this comes from. And also understand why I am so adamantly opposed to the coercion of the Involuntary Outpatient Commitment bill.Although I am writing this on Sunday, April 1, I may update it further as the days go on…You might want check back in a while to see if there are  other  developments, though anything big will get its own post.

As I mention in the post below, I wanted to bring the incidents I describe to the attention of the office of Protection and Advocacy for Persons with Psychiatric Disabilities (Or Mental Illness). I did so, about 6 months ago, and after an investigation, they found that the hospital was wrong and abusive in their repeated use of seclusion and restraints. What is more, they referred my case to the Department of Public Health recommending sanction of the hospital and immediate amelioration of the conditions that produced such abuses. Alas, I believe this means essentially just a slap on the wrist and not enough monitoring or chart reading to really keep up with them or stop them from hiding the same abuses that have gone on there for years. After all, patients have known about it for years, but no one has said anything because they have not known what to say or known that they had the right to better treatment. Or something!

I do not think that merely sanctioning the hospital or telling them to “do better” will change anything in that culture of embedded violence. So I went to the local TV station’s investigative team to ask for an investigation, and I went back to the O of P&A with more information about how I was treated by the very same security guard during my ER visit this past February, when he grabbed and pinned my arms behind my back, without provocation and without cause. He had no right to so much as touch me and should never be touching psychiatric patients so liberally. Especially when no one was in ANY danger! WR who has been dealing with my case told me he is not going to drop it, is going to the supervisors and higher-ups and see what more can be done. I myself will keep at it. This will not rest. I do not want revenge but I do need to know that they will not keep doing what they are doing to others...I need to know that patients are physically and emotionally safe there and that the one security officer who is so abusive there is taken off the psychiatric service as a danger to everyone

________________________________________________________.

On my “On Psychiatry and Authority” post, especially about what they did to me at “Middlesex Hospital,  I can now write with more accuracy. I gleaned a lot of the following directly from my records, meaning both the nursing and progress notes and the “event” notes, which should have been written after each and every incident in which they felt obliged to use measures against me involving involuntary seclusion or restraints, including such things as: physical/bodily/painful holds, physical/bodily/forced escorts, physically preventing me from leaving a “time-out” room, i.e. a seclusion room, as well as a locked door seclusion or the dreaded four-point restraints . I have also used my own journal writings here as counterpoint, some entries of which were penned as soon after these things happened as possible — that is, when I could obtain a writing implement.

The first time I wrote about the particular incident I focus on here, I did not understand why I was naked. Having read my entire medical record from the stay, I now understand more about what happened, so I will start this account where it really began, somewhat earlier in the day. Also, and this is important, while they perpetrated a criminal act on me in this incident, there were others later ones as well. During those, I am described in words that make me sound as if I have gone something near berserk…though not in those words of course. Now, there is no context given, nothing is said, not a word, of what the staff is doing TO me or with me at the time that I am going so wild, but nevertheless, the chart describes me as biting and kicking and screaming and peeing on the floor and smearing urine all over the walls…and then there are repeated use of restraints and locked seclusion where neither were “necessary” and were always destructive and traumatizing. Well, unfortunately I have no journal entries after that first time. Why? Perhaps because by then they had drugged me up on Keppra (having decided I could not take the 2 separate ones I came in on though they worked fine and without side effects ) an anti-seizure med that made me so dizzy I literally could not walk, and my vision so blurry that I could not write even if they had not prohibited the use of all writing equipment. So I can recount here only the most egregious incident, the one that I believe triggered for all the others that followed, the one after which “all bets were off” as to any future “behavior” on my part, and from which I emerged so traumatized that I didn’t give a hoot what they did to me after that…

Before I get to  it though, I want to briefly recap where I am in my struggle to recover from the trauma that this stay at Middlesex Hospital occasioned, which only increased the trauma already inflicted 6 months before at Manchester hospital. Up until the night before last, as you know, my state of terrible upset had been growing worse and worse, so that I’d gotten to the point where I could scarcely think about my 6 week stay at Middlesex without becoming nearly hysterical with trembling and anger and anxiety and terror all mixed up together. I  felt as if death impended, my heart pounding wildly,  fear screeching like a car swerving at high speed until it nearly hit a bridge abutment. Every night, every day it comes back even now (new edits 3/2012) as if happening again. Then one night, I wrote the blog entry about Trauma and Acceptance, and I began to try to think about things differently. I realized that I could parcel out thinking about Middlesex little by little so the trauma of it didn’t have to eat me alive. I realized that I might be able to save my sanity, and spare my life from total destruction at the same time, if I decided to accept what I could not change, the first step of the Serenity Prayer.

Wonder of wonders, after two days of not letting the trauma appear on my radar screen, except insofar as I gave a talk about it for the Farmington, CT, NAMI book club last night, which included reading the Acceptance blog entry as its conclusion, I have made an astonishing discovery. Up till now I had had almost complete amnesia for the Middlesex hospitalization. However, it seems that as I remain or try to remain calmer, certain episodes are coming back to me. Not fresh, not by themselves, no, but when I read in my journal or even in the records something that I did not recall on my own nor even believe was true it feels, well, possibly real, and I can just begin to “get” a sense that indeed it feels familiar, that perhaps I did do that, did say that, that it did happen, even if I would not have remembered it without the journal jogging my memory. I am wary of induced false memories, but in this case since I have records of the bare bones of what did in fact happen, I have to try to trust that at least some of what I am retrieving is not pure confabulation woven from only my imagination.

I cannot bring my mind any further down that memory path yet. But I suspect now that I formed some memories after all, that they are simply buried for some reason, and that perhaps the trauma and fear have kept them from me. Now that I can relax a bit and not feel so angry and terrorized by my amnesia and by the one clear memory I have, perhaps some, if not all, will slowly return. Since I prize my memories — they are all I have and without them I have had no life, — I want them back, as many as possible bad as well as good.

Now let me continue on to the account of  Middlesex hospital in late April, 2010 and the first time they put me in 4-point restraints.

During the MD visit the morning before, Dr N wrote: “Patient later ..(?) ..to me that she didn’t trust anyone, that no one wants to help her and she is being punished by staff. I repeatedly said that she is not being punished and she is projecting….Patient escalating tension with staff. Rigid. Wants to die. Wants to sign 3-day paper to leave.” (It is not clear what he means by “later” — did he write this after the episode of restraints, when I did in fact tell him that they punished me? It seems likely. IN which case he did not listen to anything I said…)

RN note 1:30 PM: “Alteration in thought: Patient continues on constant observation. Continues negative, irritable, testing limits. Refused initially to shower, then changed mind and agreed to, then wanted to walk out of shower into dayroom naked. Agreed to dress after informed security called to unit…”

About these notes: one, what was I projecting in thinking they wanted to punish me? What? And it is typical that Dr N blamed me for “escalating tension” with staff. I wonder if he ever saw how they worked, saw in action the mechanism by which they’d cause an  escalation. 2) Most likely, in this case, I was threatened that if I did not shower I would not get off 1:1, so I “changed my mind.” And it seems to me that if someone “wanted” to get out of shower and walk into dayroom naked, it is a matter that the nurses could handle and ought to. I weighed all of maybe 98 pounds then. And if they had closed the door and made me dress, they could have. Why call security unless they wanted to threaten me, terrify me? That was neither compassionate nor caring. Methinks it was, aha, punishment.)

Moving right along…

All the details  that follow are “accurate” insofar as they are derived from official documents or my journal. Accurate in that sense. But remember that in the records, NO context is ever given, the behavior of the staff is rarely described, or only in the briefest and most self-serving ways. NO context is even given to MY behavior.

The nurse who wrote up the night’s notes says that I was angry the entire evening and demanded continuously that she call the on-call doc to discontinue my 1:1 status.  For some reason she writes that I was “unable to follow directions” when she tried to assess me for, I presume, safety, perhaps so I can get off 1:1. I don’t know what she is talking about here, but it is typical that the nurses cared only about a patient’s taking orders and following directions.

Anyhow, at around 7:30, she wrote that I “walked into the dayroom” and according to the RN notes, without any provocation (which is highly doubtful) began shoving and turning over chairs and then picked up the patient trash can and put it over my head. Although at that point the staff told me to “walk with them to the “time out room” I refused and “went to bed instead.” (That was written in the chart: I WENT TO BED INSTEAD.) Now, you would think that this would be fine, after all, would not they want me to go to bed and calm down? But no, I had not “followed directions” and so of course “security was called and patient required security to carry her to time-out room as she refused to move or walk.” Remember that this “time-out room” is exactly the same thing as the “seclusion room” — it is the same room, with the same “withouts” — without heat, without windows, without anyone to talk to, without blankets, without a toilet, without anything to make one comfortable…just a thin mat on the linoleum floor, unless they have taken it out. So they barged into my room where I had gone to calm myself down, and picked me up bodily and carried me to the seclusion room. That means by definition that they physically restrained me and physically, forcibly escorted me to the seclusion room where they prevented me from leaving, all of which are NOT permitted except in the case of “severe and imminent danger to self or others”…(so an event note should have been written up and a physician’s orders should have been gotten). There I took their Ativan and was told that I had to stay in the room for 30 minutes.  Why not in my own room for 30 minutes?  Because time spent in the time-out room is a punishment. Parents make children stay in a time-out room (usually their bedrooms!) when they don’t obey. Why? Because that’s their punishment. But staff doesn’t punish. No, they don’t punish…

Now this is how I remembered it the next morning in my journal: “I had been told to go to the time-out room, which I did voluntarily…” (apparently I did not remember that I had been physically carried there, but there is some confusion in the records too, because I went and then left and then was carried back…). “But it was cold and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back into that cold and sterile room, 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 it this way: “Patient refused to stay in time-out room, 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 agree that I stripped off all my clothing. But the official records state only that fact, and that I “was changed into hospital garb” but in my journal I write something entirely different and rather revealing: Left alone in that cold and sterile room, I decide “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 got up and tried to push through the woman barring the unlocked door. She called for reinforcements and they came en masse. (Note: I spelled this “unmasse” — a dyslexic spelling of the first order. This is a symptom of my acute neuro-Lyme disease, since I was always a first-rate speller and would never have had difficulty with “en masse” had I not been in the middle of a flare up… as they knew full well).

“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. The security guard seemed taken aback. All these personnel hours wasted when all I wanted was one 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.”

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 and got me onto the hard floor, my cheek on the dirty linoleum and breathing dust. At first I struggled but then I realized that the less I did so, the less they applied pressure (there must have been six people or more holding me face down on the floor,  one of them practically sitting on me…).

Finally I stopped resisting and they let me sit up, finally giving me a blanket or sheet to cover myself with. The room cleared as everyone left except for one nurse, who was on one to one with me. She apparently was now allowed to talk with me and we conversed calmly. The door to the seclusion room was also now open.

However, there was some soft talking outside the door and I heard someone walking down the hall and opening a cabinet. I had a bad feeling about it and asked the 1:1 nurse what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”  This gave me a very bad feeling, and I suddenly 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 calm. You know that.” I said that again loudly, loud enough so whoever was down the hall could hear me.  I began to tremble, but forced myself to remain as composed as I could. Another staff member then came into the room and asked me to come down the hall. Did I need an escort or could I do so myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm and it is illegal.” Nevertheless, I followed her to the empty room — I felt like “dead man walking” when I saw indeed that they had fastened restraints on the bed. The room was filled with staff members and security 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 said anything except to reiterate that they would assist me if I did not lie down on the bed myself. I was so terrified that they would assault me and hurt me, terrified of the fear itself, that I simply got it over with, lay down on the bed, naked, and let them do what they wanted to do, gritting my teeth when they removed the blanket that was covering me. Well, here is what I did not remember, the account after that from my journal:

“Well, you know that despite my complete lack of resistance, they shackled me 4 points (badly as their restraints did not actually fit the bed — restraints are supposed to keep the arms at your sides not below the level of the bed, and your legs are not supposed to be spread-eagled! I protested this fact but not so loud as to disturb others [when they released me] my back hurt so badly I could barely walk and once more my scapula muscles felt as if they had been separated.”

“I plan to sue you for doing this to me.” I said calmly to all as I left the room. Nobody reacted…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.”

Nursing notes were rather different, and I think were written after the fact, and hastily, perhaps not exactly ‘fact-checked” for accuracy after all. [Did a family practice doctor really see me? I do not believe so…why else would I not tell anyone about the pain, which she reports as non-existent.) But here is what she writes about the “scuffle” in the seclusion room:

“Patient was changed into hospital garb which she also stripped off. she demanded a blanket which was not given due to concerns about her tying it around her neck. [Note that I was ALWAYS under one to one surveillance!] She was encouraged to put the johnny back on and she refused. After staff left the seclusion room, patient placed mattress over herself where no staff including her 1:1 could visualize her. When staff entered room and removed mattress, patient again darted toward staff and attempted to flee. Pushed at staff, then kicked at staff, and attempted to trip staff  wrapping her legs around RN’s leg. During the scuffle patient ripped bandage off her leg and yelled, “I have AIDS. I didn’t tell anyone that before!” She refused to remain in locked seclusion without attempting to harm others. Patient covered with sheet and walked to empty patient room where 4 point restraints were applied. Patient continued agitated initially then was quiet lying still.” [Patient can come out of restraints when able to refrain from aggressive behavior towards staff and property and can follow directions.]

Now you get the picture. I was put into restraints as punishment, but as an excuse for it, they made up a reason, which is is how I can get out of them: stop being aggressive towards, 1) staff ( remember who dragged me into seclusion room? I had gone to my room and they dragged me out of it just to teach me a lesson in the punishment room! 2) property – I was a danger to property… I do not think somehow that danger to property is one of the reasons a person can be put in restraints in this state or this country. And the danger was that I had put a wastebasket over my head! 3)  following directions, well I won’t even go there. Just look at those “justifications” for keeping me in restraints and you will see just why I know they “had it in for me” that particular episode, but in fact were trying to get me most of the time I was there.

Be that as it may, I have contacted the Commissioner of Mental Health, and hope to contact the Office of Protection and Advocacy, which oversees the private hospitals in the state as opposed to the state hospitals, though I do not see why the commissioner is not involved in any hospital that takes state money, as all the private ones do…And seeing as I am a Medicaid patient when hospitalized, I would be a state patient were it not for the private hospitals being forced to take such patients in this economy, whereas years ago they could pick and choose, and did.

Finally, the MD’s “event note” observes upon exam in the restraint room that  the patient is “generally agitated, very verbal, lying in bed with the help of staff and security to calm her down…” I beg your pardon? Calm her down?! I was being restrained, one, and two, I was being tied to the bed with my arms over the edges of the bed, below the level of the mattress, and my legs were spread-eagled –I was naked, remember? and all of them knew it.

So that is all I have to write tonight. I am appalled. What sort of people could do that to anyone? Who were they once, and how did they become so jaded and cruel? Surely, as nurses, they must have once been idealistic and good-hearted and compassionate. Most people who go into nursing are and I doubt that many go into it for the money or for any other reason than that they care about people. I simply have never met any young nurse who was not idealistic and caring, but I suppose there might be one or two. So what happened to this group? Could it be their own “society” is not supportive, is backbiting and so lacking in cohesiveness that they take out their own frustrations and lack of positive feedback on those patients who least please them?

I dunno, I have been told that this mechanism is sometimes at work on units where staff behavior is out of control in such a way. But what made them in fact so much into control and coercion at all? Why were they not themselves empowered by compassion and kindness, which would have fed them better as it fed the patients better as well? How did it come about that they learned the wrong lessons? I don’t know, and probably will never know. But I did catch a sense of these strengths in one or two of the nurses, just buried in fatigue or long ago burned out…

Too many were too personally invested in the patients liking them or in behaving for them in such a way that made their jobs easy! That was stupid and nonsensical. Why should the patients have to be or do anything for the nurses? The patients cannot control their illnesses and staff forgot that in their own need to be in control and to have their own need met by their patients. I think  that is what it comes down to: at Middlesex, the staff’s needs were not being met by each other, or by the supervisors and colleagues, so they looked outward, and who did they expect to meet their needs but their patients, who could not, and could never do so. So they tried to make them, force them to. Or at least to toe the line and make each day quiet and easy to get through. What a farce. What a lousy place to be sick in, what a sick place to try to get well in…

That’s enough for tonight.

Psychiatry and Abuse: restraint chair in hospital?

They restrain prisoners in this dangerous chair
Perople have died in this restraint chair -- in Guantanamo, yet they made me sit in one in Manchester Hospital in Connecticut, 2009

Some memories are returning. Not a great many but this one was triggered by something I heard briefly on television the other day, simply the mention  in some other context, of the words “restraint chair” and in an instant I flashed back (and I use those two words advisedly, since I do not actually know what is meant by a “flashback”) on something that happened when I was a priso…excuse me, patient, albeit involuntary, at Manchester Hospital in the fall of 2009.

This had been an extremely brutal stay up till then. When I was admitted the psychiatrist I was assigned to Dr BZ — I have written of this elsewhere so I won’t recap the whole thing, as memory is fickle and I may have misremembered it by now — stopped most or all of my meds, saying that if I was there, clearly they didn’t work. Then he swore I would take the one drug I refused to take: Zyprexa, and he scheduled a forced medication hearing, which naturally I would lose, having no power and only my word against his as to whether or not I needed it. Well, I did lose it, but inexplicably, and sadistically, instead of forcing on me a drug that by all accounts helped me, he changed this to TRILAFON, an old drug that did nothing for me and only made me completely miserable.

The upshot was that every time they came to me with medications, I flatly refused to take the Trilafon, even under the threat of a Haldol injection, The goon squad was called, and since I refused to quietly accept my punishment, they assaulted me, stripped me, and  forcibly injected me. This got to the point that they started four point restraining me to the bed, just to inject me…And it because such a routine that to avoid the “tiresome process” of getting out the restraints they simply left them attached to my bed. I know this not because i remember it but because my friend Josephine told me she saw them.

Me? I was so snowed by Haldol most of the time, that I could never even find my room, and had a sign in large letters taped to the door so I would simply recognize it when and if I managed to find it. Also, I was so dazed that I had to wear red slipper socks as a fall risk…but no one ever decided that maybe this was due to the drugs they were giving me!

Anyhow, one day, one day…and here is where memory kicked in after hearing those awful words on TV: one day the nurse who was most in charge of the daily torment, came to the door with another nurse pushing this large chair, and i recognized what it was at once. I had seen them before, having reviewed a book a long time before for the LA Weekly on the treatment of the mentally ill both in hospitals and prisons, a book, moreover decrying “barbaric treatments” of the past.

“You aren’t going to put me in that, are you? I’m not coming anywhere near it!” I shrank away from them and ran to the other side of my bed.

“We won’t restrain you, not  if you behave. But we want you to sit in it for today. There are no restraints on it now. It is just a comfortable chair. Come, sit down. The student nurse will be with you all day today.”

Then they essentially forced me to sit down and stay in the chair. Or else…I was terrified. and the student nurse knew it. Luckily, she would turn out to be a kind and wonderful young woman (her experience at Manchester almost drove her away from psych nursing, but  as it turned out she discovered Natchaug Hospital, and became one of their most beloved nurses). As she told me later — because memory mostly fails me here, but for her reminders — she did Reiki with me, the practice of nearly touching a person but not quite, and moving her hands along my body, not sure how it works or worked, but she later told me, at Natchaug, that I responded well to it, and stayed calm all day. I even as she said, took my meds. Which means I actually swallowed the Trilafon, probably because I couldn’t bear to have another fight in front of her.

Whatever was the case, if Reiki is as I described it, no wonder I responded well, as it was a NON-physical therapeutic way of dealing with me, non-assaultive, gentle, non-trespassing and non-brutal. Why the rest of them could not have followed suit or come up with some other way to treat me as she did, I will never know. Clearly they learned nothing from her; she left and likely they are back to treating others as they did me.

I believe they would indeed have used that chair as a restraint chair on me. I do not think they brought it in just as a comfortable chair, I believe it was to intimidate me, to cow me, but I think too that they were in fact prepared to use it. I do not have the slightest doubt. I would put nothing past those people who so brutalized me as to put me in four point restraints over and over during more than 8 days. For all I know it might have been more than eight days. I simply do NOT know, as amnesia has sealed up much more than memory preserved.

Enough for now. I need to write tomorrow about the Versatile Blogger Award that DogKisses gave to me. I am shamefully late in thanking her. And I do not know how to place the badge on my site, but she was such a lovely blogger to do so, that I do owe her her own post of thanks and appreciation.

More tomorrow.

Shock Treatment (ECT) in 2004

(Edited in 3/2012 . Note that all names have been changed back to their originals except for names of the people involved. Although in Divided Minds, we were forced by the publishers to disguise everyone, including the hospitals, here descriptions of people once  changed to “protect them” have been undisguised. 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 — and I intend no libel in any event. In fact, I want to be as fair as possible and to bend over backwards in giving as much credit where it is due as possible.

Note, because many may have read this before, I want to

I hope this will be a chapter in BLACKLIGHT, my second memoir and a possible sequel as it were to DIVIDED MINDS.

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, residual acne scars that give her a kind of “I’ve suffered too” look of understanding, and rimless glasses 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 Corner 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’s. 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 Corner, 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 Corner 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 the to the ECT suite 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, under our own steam, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. Then, when we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us so there’s 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 Corner 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 Corner 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, even though my symptoms are still severe and Caledonia comes to sit with me one to one more often than not. Dr Corner tries to persuade me, but I am adamant, No more ECT. 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 Corner’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. Dr Corner never lies. Worst of all, Dr O’Hayley, 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. The problem is that to get a court order I have to have a conservator who will agree to it. They 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 Corner wins and I endure eight more ECT sessions. Finally I’m discharged, much improved, so everyone says, a month later, promising, as a condition of my release, that I’ll continue to take Zyprexa. 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 Corner 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 Raphaels and that the doctor has no power over me at all now, zilch. So I write Dr Corner a nice apologetic letter, but sorry, doc, no more ECT for me. Ever.

Several months later I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of electroshock treatments.

Reflection on Room 101 in Ward D

Here is the sign I posted above the collage as it was finally presented today at Artspace:

 

 

 

REFLECTIONS ON ROOM 101* IN  WARD D

Collage, available as is or finished with bound edges

$1800.00/$2000.00

 

I started this collage at Natchaug Hospital in Willimantic, using scraps torn from magazines and glued onto a large sheet of brown paper. This was my effort to deal with the emotional trauma associated with other hospitals where I had been far too frequently shackled in four-point restraints. Although I have tried to depict a seclusion room realistically, I have also taken some artistic license: in a real such situation, the restraint bed would be facing the door, so that an aide or nurse monitoring the patient would be able to see his or her face clearly. And here, of course, the window is neither heavily grated nor closed. Instead, it has been opened (how? by whom?) and we see a winding path that leads far away…

*In George Orwell’s book 1984, Room 101 in the Ministry of Love is where recalcitrant prisoners are tortured, the instrument being whatever it is they are most afraid of.

mirror view into a seclusion room with a restraints bed.

You  really need to stand back from it to get the full effect, but this wasn’t possible, despite my wall being on a T intersection of hallways as someone had planted a bright torchiere lamp down the perpendicular hall. This was helpful for other displays but unfortunatley caught the light in such a way as to cause my collage to reflect it, leading to glare and poor visibility of necessary features. Ah well, live and learn, live and learn. Had I known this would happen, I would not have used a gloss finish on the mirror section, even though I wanted to in order to make it look “mirrory” compared to the non-mirrored “flat” or matte parts…

I have a few other things to say about my experience at the OpenStudio show and sale today — I was quite uncomfortable despite appearances. Or at least I think I presented a comfortable and at ease appearance. But in point of fact there were three or four women in my hallway who were talking about me and who did not want me there. I think the woman who was almost directly across from me, except for the space where the T opened up to the other perpendicular hall, was particularly upset with me and trying to marshall support from others against me. I don’t know what I did to bother her, but she clearly had conceived an antipathy to me. She was the one I believe who won the award at the group show. I thought her paintings, decent, glowing and colorful, and skilled to a nice degree, though not all that creative to my eye. Highly colored oil paintings, likeable but somehow a bit lifeless I cannot quite say why because everyone else seemed very impressed.

Be that as it may, I do not trust her and frankly I believe she is likely bad-mouthing me as I write this. I had the distinct impression that she was enlisting support from those others to get rid of me at the exhibit, and even harm me in some fashion. Every time I left for one reason or another, or walked down that hall to get to the stairs, I felt watched and heard them whispering. Damn her and damn them. I could have had a reasonably okay time, had they not taken to tormenting me…though in point of fact, had not a few visitors talked to me a bit, I would have sat in silence all day long, except for when my family came. No other neighboring artist spoke to me all the day and no one even so much as introduced themselves. If anyone did anything — conversed with me, introduced themselves, started a conversation, it was I who had to do it, and then it seemed as if they responded only reluctantly.

However, I should cease and desist at this for now as I left out my “business” cards, and so I guess any artist there could have, though I doubt it, picked one up and could now be “listening in.”

In any event, I am doing a little drawing at the moment, small cards, “trading card-size” drawings. Dunno if I will give those away, trade them, or not. But it is fun to work on such a small scale nonetheless.

The only thing I would give away free this time for sure, though I have given and donated a lot previously, is Christabel, the portrait collage. If the real Christabel came along and introduced herself (with proof that she is who she is, because my amnesia for that hospital stay is such that despite my remembering her kindness I do not actually remember her face or anything else about her) if she came to see the show and saw her portrait finished, I would happily give her the collage wall-hanging for free. So Christabel, that is my offer. (I won’t know you, but if you remember me and come to the show, find me and find your portrait.)

Enough for now. Just wanted to let my readers see the final “product” in case it sells. Fat chance of that though. It looks as if I will be going home with literally everything I brung with me…Well, it is a learning experience. And it has been that to the max.

Psychiatry and Authority: Restraints Update

 

 

 

I want to update my “On Psychiatry and Authority” post, especially about what they did to me at “MIddlesex Hospital, which I can now do with more accurate data. I gleaned a lot of the following directly from my records, meaning both the nursing and progress notes and the “event” notes, which should have been written after each and every incident in which they felt obliged to use measures against me involving involuntary seclusion or restraints, including such things as: physical/bodily/painful holds, physical/bodily/forced escorts, physically preventing me from leaving a “time-out” room, i.e. a seclusion room, as well as a locked door seclusion or the dreaded four-point restraints . I have also used my own journal writings here as counterpoint, some entries of which were penned as soon after these things happened as possible — that is, when I could obtain a writing implement.

The first time I wrote about the particular incident I focus on here, I did not understand why I was naked. Having read my entire medical record from the stay, I now understand more about what happened, so I will start this account where it really began, somewhat earlier in the day. Also, and this is important, while they perpetrated a criminal act on me in this incident, there were others later ones as well. During those, I am described in words that make me sound as if I have gone something near berserk…though not in those words of course. Now, there is no context given, nothing is said, not a word, of what the staff is doing TO me or with me at the time that I am going so wild, but nevertheless, the chart describes me as biting and kicking and screaming and peeing on the floor and smearing urine all over the walls…and then there are repeated use of restraints and locked seclusion where neither were “necessary” and were always destructive and traumatizing. Well, unfortunately I have no journal entries after that first time. Why? Perhaps because by then they had drugged me up on Keppra (having decided I could not take the 2 separate ones I came in on though they worked fine and without side effects ) an anti-seizure med that made me so dizzy I literally could not walk, and my vision so blurry that I could not write even if they had not prohibited the use of all writing equipment. So I can recount here only the most egregious incident, the one that I believe triggered for all the others that followed, the one after which “all bets were off” as to any future “behavior” on my part, and from which I emerged so traumatized that I didn’t give a hoot what they did to me after that…

Before I get to  it though, I want to briefly recap where I am in my struggle to recover from the trauma that this stay at Middlesex Hospital occasioned, which only increased the trauma already inflicted 6 months before at Manchester hospital. Up until the night before last, as you know, my state of terrible upset had been growing worse and worse, so that I’d gotten to the point where I could scarcely think about my 6 week stay at Middlesex without becoming nearly hysterical with trembling and anger and anxiety and terror all mixed up together. I  felt as if death impended, my heart pounding wildly,  fear screeching like a car swerving at high speed until it nearly hit a bridge abutment. Every night, every day it comes back even now (new edits 3/2012) as if happening again. Then one night, I wrote the blog entry about Trauma and Acceptance, and I began to try to think about things differently. I realized that I could parcel out thinking about Middlesex little by little so the trauma of it didn’t have to eat me alive. I realized that I might be able to save my sanity, and spare my life from total destruction at the same time, if I decided to accept what I could not change, the first step of the Serenity Prayer.

Wonder of wonders, after two days of not letting the trauma appear on my radar screen, except insofar as I gave a talk about it for the Farmington, CT, NAMI book club last night, which included reading the Acceptance blog entry as its conclusion, I have made an astonishing discovery. Up till now I had had almost complete amnesia for the Middlesex hospitalization. However, it seems that as I remain or try to remain calmer, certain episodes are coming back to me. Not fresh, not by themselves, no, but when I read in my journal or even in the records something that I did not recall on my own nor even believe was true it feels, well, possibly real, and I can just begin to “get” a sense that indeed it feels familiar, that perhaps I did do that, did say that, that it did happen, even if I would not have remembered it without the journal jogging my memory. I am wary of induced false memories, but in this case since I have records of the bare bones of what did in fact happen, I have to try to trust that at least some of what I am retrieving is not pure confabulation woven from only my imagination.

I cannot bring my mind any further down that memory path yet. But I suspect now that I formed some memories after all, that they are simply buried for some reason, and that perhaps the trauma and fear have kept them from me. Now that I can relax a bit and not feel so angry and terrorized by my amnesia and by the one clear memory I have, perhaps some, if not all, will slowly return. Since I prize my memories — they are all I have and without them I have had no life, — I want them back, as many as possible bad as well as good.

Now let me continue on to the account of  Middlesex hospital in late April, 2010 and the first time they put me in 4-point restraints.

During the MD visit the morning before, Dr N wrote: “Patient later ..(?) ..to me that she didn’t trust anyone, that no one wants to help her and she is being punished by staff. I repeatedly said that she is not being punished and she is projecting….Patient escalating tension with staff. Rigid. Wants to die. Wants to sign 3-day paper to leave.” (It is not clear what he means by “later” — did he write this after the episode of restraints, when I did in fact tell him that they punished me? It seems likely. IN which case he did not listen to anything I said…)

RN note 1:30 PM: “Alteration in thought: Patient continues on constant observation. Continues negative, irritable, testing limits. Refused initially to shower, then changed mind and agreed to, then wanted to walk out of shower into dayroom naked. Agreed to dress after informed security called to unit…”

About these notes: one, what was I projecting in thinking they wanted to punish me? What? And it is typical that Dr N blamed me for “escalating tension” with staff. I wonder if he ever saw how they worked, saw in action the mechanism by which they’d cause an  escalation. 2) Most likely, in this case, I was threatened that if I did not shower I would not get off 1:1, so I “changed my mind.” And it seems to me that if someone “wanted” to get out of shower and walk into dayroom naked, it is a matter that the nurses could handle and ought to. I weighed all of maybe 98 pounds then. And if they had closed the door and made me dress, they could have. Why call security unless they wanted to threaten me, terrify me? That was neither compassionate nor caring. Methinks it was, aha, punishment.)

Moving right along…

All the details  that follow are “accurate” insofar as they are derived from official documents or my journal. Accurate in that sense. But remember that in the records, NO context is ever given, the behavior of the staff is rarely described, or only in the briefest and most self-serving ways. NO context is even given to MY behavior.

The nurse who wrote up the night’s notes says that I was angry the entire evening and demanded continuously that she call the on-call doc to discontinue my 1:1 status.  For some reason she writes that I was “unable to follow directions” when she tried to assess me for, I presume, safety, perhaps so I can get off 1:1. I don’t know what she is talking about here, but it is typical that the nurses cared only about a patient’s taking orders and following directions.

Anyhow, at around 7:30, she wrote that I “walked into the dayroom” and according to the RN notes, without any provocation (which is highly doubtful) began shoving and turning over chairs and then picked up the patient trash can and put it over my head. Although at that point the staff told me to “walk with them to the “time out room” I refused and “went to bed instead.” (That was written in the chart: I WENT TO BED INSTEAD.) Now, you would think that this would be fine, after all, would not they want me to go to bed and calm down? But no, I had not “followed directions” and so of course “security was called and patient required security to carry her to time-out room as she refused to move or walk.” Remember that this “time-out room” is exactly the same thing as the “seclusion room” — it is the same room, with the same “withouts” — without heat, without windows, without anyone to talk to, without blankets, without a toilet, without anything to make one comfortable…just a thin mat on the linoleum floor, unless they have taken it out. So they barged into my room where I had gone to calm myself down, and picked me up bodily and carried me to the seclusion room. That means by definition that they physically restrained me and physically, forcibly escorted me to the seclusion room where they prevented me from leaving, all of which are NOT permitted except in the case of “severe and imminent danger to self or others”…(so an event note should have been written up and a physician’s orders should have been gotten). There I took their Ativan and was told that I had to stay in the room for 30 minutes.  Why not in my own room for 30 minutes?  Because time spent in the time-out room is a punishment. Parents make children stay in a time-out room (usually their bedrooms!) when they don’t obey. Why? Because that’s their punishment. But staff doesn’t punish. No, they don’t punish…

Now this is how I remembered it the next morning in my journal: “I had been told to go to the time-out room, which I did voluntarily…” (apparently I did not remember that I had been physically carried there, but there is some confusion in the records too, because I went and then left and then was carried back…). “But it was cold and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back into that cold and sterile room, 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 it this way: “Patient refused to stay in time-out room, 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 agree that I stripped off all my clothing. But the official records state only that fact, and that I “was changed into hospital garb” but in my journal I write something entirely different and rather revealing: Left alone in that cold and sterile room, I decide “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 got up and tried to push through the woman barring the unlocked door. She called for reinforcements and they came en masse. (Note: I spelled this “unmasse” — a dyslexic spelling of the first order. This is a symptom of my acute neuro-Lyme disease, since I was always a first-rate speller and would never have had difficulty with “en masse” had I not been in the middle of a flare up… as they knew full well).

“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. The security guard seemed taken aback. All these personnel hours wasted when all I wanted was one 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.”

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 and got me onto the hard floor, my cheek on the dirty linoleum and breathing dust. At first I struggled but then I realized that the less I did so, the less they applied pressure (there must have been six people or more holding me face down on the floor,  one of them practically sitting on me…).

Finally I stopped resisting and they let me sit up, finally giving me a blanket or sheet to cover myself with. The room cleared as everyone left except for one nurse, who was on one to one with me. She apparently was now allowed to talk with me and we conversed calmly. The door to the seclusion room was also now open.

However, there was some soft talking outside the door and I heard someone walking down the hall and opening a cabinet. I had a bad feeling about it and asked the 1:1 nurse what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”  This gave me a very bad feeling, and I suddenly 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 calm. You know that.” I said that again loudly, loud enough so whoever was down the hall could hear me.  I began to tremble, but forced myself to remain as composed as I could. Another staff member then came into the room and asked me to come down the hall. Did I need an escort or could I do so myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm and it is illegal.” Nevertheless, I followed her to the empty room — I felt like “dead man walking” when I saw indeed that they had fastened restraints on the bed. The room was filled with staff members and security 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 said anything except to reiterate that they would assist me if I did not lie down on the bed myself. I was so terrified that they would assault me and hurt me, terrified of the fear itself, that I simply got it over with, lay down on the bed, naked, and let them do what they wanted to do, gritting my teeth when they removed the blanket that was covering me. Well, here is what I did not remember, the account after that from my journal:

“Well, you know that despite my complete lack of resistance, they shackled me 4 points (badly as their restraints did not actually fit the bed — restraints are supposed to keep the arms at your sides not below the level of the bed, and your legs are not supposed to be spread-eagled! I protested this fact but not so loud as to disturb others [when they released me] my back hurt so badly I could barely walk and once more my scapula muscles felt as if they had been separated.”

“I plan to sue you for doing this to me.” I said calmly to all as I left the room. Nobody reacted…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.”

Nursing notes were rather different, and I think were written after the fact, and hastily, perhaps not exactly ‘fact-checked” for accuracy after all. [Did a family practice doctor really see me? I do not believe so…why else would I not tell anyone about the pain, which she reports as non-existent.) But here is what she writes about the “scuffle” in the seclusion room:

“Patient was changed into hospital garb which she also stripped off. she demanded a blanket which was not given due to concerns about her tying it around her neck. [Note that I was ALWAYS under one to one surveillance!] She was encouraged to put the johnny back on and she refused. After staff left the seclusion room, patient placed mattress over herself where no staff including her 1:1 could visualize her. When staff entered room and removed mattress, patient again darted toward staff and attempted to flee. Pushed at staff, then kicked at staff, and attempted to trip staff  wrapping her legs around RN’s leg. During the scuffle patient ripped bandage off her leg and yelled, “I have AIDS. I didn’t tell anyone that before!” She refused to remain in locked seclusion without attempting to harm others. Patient covered with sheet and walked to empty patient room where 4 point restraints were applied. Patient continued agitated initially then was quiet lying still.” [Patient can come out of restraints when able to refrain from aggressive behavior towards staff and property and can follow directions.]

Now you get the picture. I was put into restraints as punishment, but as an excuse for it, they made up a reason, which is is how I can get out of them: stop being aggressive towards, 1) staff ( remember who dragged me into seclusion room? I had gone to my room and they dragged me out of it just to teach me a lesson in the punishment room! 2) property – I was a danger to property… I do not think somehow that danger to property is one of the reasons a person can be put in restraints in this state or this country. And the danger was that I had put a wastebasket over my head! 3)  following directions, well I won’t even go there. Just look at those “justifications” for keeping me in restraints and you will see just why I know they “had it in for me” that particular episode, but in fact were trying to get me most of the time I was there.

Be that as it may, I have contacted the Commissioner of Mental Health, and hope to contact the Office of Protection and Advocacy, which oversees the private hospitals in the state as opposed to the state hospitals, though I do not see why the commissioner is not involved in any hospital that takes state money, as all the private ones do…And seeing as I am a Medicaid patient when hospitalized, I would be a state patient were it not for the private hospitals being forced to take such patients in this economy, whereas years ago they could pick and choose, and did.

Finally, the MD’s “event note” observes upon exam in the restraint room that  the patient is “generally agitated, very verbal, lying in bed with the help of staff and security to calm her down…” I beg your pardon? Calm her down?! I was being restrained, one, and two, I was being tied to the bed with my arms over the edges of the bed, below the level of the mattress, and my legs were spread-eagled –I was naked, remember? and all of them knew it.

So that is all I have to write tonight. I am appalled. What sort of people could do that to anyone? Who were they once, and how did they become so jaded and cruel? Surely, as nurses, they must have once been idealistic and good-hearted and compassionate. Most people who go into nursing are and I doubt that many go into it for the money or for any other reason than that they care about people. I simply have never met any young nurse who was not idealistic and caring, but I suppose there might be one or two. So what happened to this group? Could it be their own “society” is not supportive, is backbiting and so lacking in cohesiveness that they take out their own frustrations and lack of positive feedback on those patients who least please them?

I dunno, I have been told that this mechanism is sometimes at work on units where staff behavior is out of control in such a way. But what made them in fact so much into control and coercion at all? Why were they not themselves empowered by compassion and kindness, which would have fed them better as it fed the patients better as well? How did it come about that they learned the wrong lessons? I don’t know, and probably will never know. But I did catch a sense of these strengths in one or two of the nurses, just buried in fatigue or long ago burned out…

Too many were too personally invested in the patients liking them or in behaving for them in such a way that made their jobs easy! That was stupid and nonsensical. Why should the patients have to be or do anything for the nurses? The patients cannot control their illnesses and staff forgot that in their own need to be in control and to have their own need met by their patients. I think  that is what it comes down to: at Middlesex, the staff’s needs were not being met by each other, or by the supervisors and colleagues, so they looked outward, and who did they expect to meet their needs but their patients, who could not, and could never do so. So they tried to make them, force them to. Or at least to toe the line and make each day quiet and easy to get through. What a farce. What a lousy place to be sick in, what a sick place to try to get well in…

That’s enough for tonight.