Tag Archives: Recovery

Health, Health Care Reform, Hospital, Institute Of Living, Mental Illness, Seclusion and Restraints

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

February 14, 2013 Phoebe Sparrow Wagner 7 Comments

These are the first two pages, including a note from the cover page, of my very very detailed Psychiatric Advanced Directive, and I think you will see why what happened at the Institute of Living, the psychiatric section of Connecticut’s Hartford Hospital, NEVER should have happened. Not only did I bring a hard copy of this PAD, but I wore a medical bracelet with a code for a very complete online medical record, with uploaded documented evidence, both of narcolepsy diagnosis and need for medication, proof from longtime outside mental health providers that I do NOT have “borderline personality disorder,” and other such assistive documents…ALL were soon ignored completely in the effort to discipline and punish me “for not following directions” i.e. not getting better fast enough and speaking my mind to the psychiatrist.

__________________

Prominent NOTE on cover page:

Miss Wagner has experienced multiple episodes of severe psychological and physical trauma. She must NOT be subjected to either physical or mechanical restraints or involuntary seclusion at ANY time. The use of either imposes a serious risk of re-traumatizing and injury, leading to regression and severe worsening of symptoms.

Pg 2.

HOW TO INTERVENE IN A CRISIS:

DE-ESCALATION IS ESSENTIAL

1. PLEASE REMEMBER: I can calm down if YOU follow these steps and do not threaten me, order me around, or approach me in anger or in fear.
I need one person to talk to. I should be approached calmly, by someone who will speak in a kind and respectful manner, understanding that above all:
I AM SCARED and my anger masks fear. I am not dangerous. I WILL ONLY FIGHT IF YOU ATTACK ME. Please remember that any show of force and people ganging up on me to administer forced medication will be felt as an attack.
I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
DO NOT ISSUE ULTIMATUMS you won’t back down from…That will push me into a corner and you too, and will serve nothing but to escalate the crisis.
A calm unthreatening and unthreatened person should ask me calmly and patiently if I can speak in a lower tone of voice, so she can hear me better. Ask me if I can take a deep breath and try breathing techniques that will have flown my head in the moment of crisis.
Should you have a COMFORT room available, you can guide me gently to it but do not close me alone. Make sure I am warm…
ABOVE ALL YOU NEED TO BE PREPARED TO LISTEN TO ME. This is not just a matter of forcing medication. Medication may not even be needed if you hear what is going on and what the problem is.
If you take these simple steps, it is virtually guaranteed that the situation will resolve calmly and without any need to resort to the sorts of violence that would permanently damage and re-traumatize me (or produce secondarily negative behaviors afterwards): seclusion, forcible injections, or mechanical restraints or physical holds.

p 3

STATEMENT TO CAREGIVERS

It is vitally important that you understand that despite a few previous in-hospital assessments, I do not have a personality disorder, borderline or otherwise (you can confirm this with any of my longtime outpatient providers) and that if my behavior seems out of control, it is because I am out of control: I literally do not at the time know what I am doing or why. I am not manipulative or attempting to achieve secondary gain. The fact is I have had tertiary CNS Lyme disease and after positive PCR and Western Blot tests during treatment, I was informed the condition is likely incurable. (Dr ******* of ****** NY, will confirm this.) During the initial illness, my brain developed multiple lesions, visible on MRI, which may predispose me to temporary emotional and behavioral extremes and abnormalities but these are NOT my norm. Anyone who knows me well would confirm this, if you asked them.

You need to understand that I am not always able to communicate the extreme fear I feel, the global paranoia that I experience, but because I feel so threatened and unable to communicate clearly about it I may become very angry at the hospital situation. I am not an angry person. I do have trauma issues, as many people do, which may be exacerbated by being in the hospital.

Please be aware in advance that my “memory in the p.m. for what happened in the a.m.” is often faulty. That is just how it is. When in crisis, I have little ability to recall from moment to moment what happens. This is why it is essential that I be able to write things down. I have lost many years to this amnesia and if I suffer additional trauma it will only make it worse.

I beg of you, do not make assumptions about me. Do not make assumptions about my state of mind. Do not “put two and two together” in your mind without asking me if the conclusion you have drawn is the correct one. You do not know what is inside my head without asking me.

Ascertain whether the information you have at hand is correct. Too many records and hospital charts have been drawn up (because “patient is not communicating”) on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating. PLEASE CHECK MY INTERACTIVE HEALTH RECORD ONLINE at www. — .com Use code ***** to get access.

I have been traumatized by abuse, sexual assault and by brutal treatment in hospitals, from being deliberately choked and given forced ECT to being kept in four-point restraints for several days at a time. So if I experience seclusion or restraints or even that euphemistic obscenity called a “therapeutic hold” it will be devastating and counterproductive. Such treatment invariably leads to increased anger, regression and worsening of symptoms, and my behavior becomes unpredictable afterwards. This is a response to trauma NOT because of any inborn temperamental disorder. I have already outlined a better way to deal with me and help me on page 2.

I KNOW YOU MAY NOT APPROVE OF POLYPHARMACY. But you need to understand that I must take the antipsychotic drug combination: Abilify 15mg with Geodon 160mg, a TWO-Drug regimen. Monotherapy does not work. I have tried many solo drugs over the course of 4 decades – Thorazine, Mellaril, Haldol, Prolixin, Clozaril, Risperdal, Seroquel, Zyprexa and others – ALL monotherapy has failed.

I will not take any drug that induces weight gain. If you force the issue, know that it will be a useless endeavor because I will stop taking it immediately upon leaving the hospital.

Finally, understand that if I am here in the hospital it is for a reason, and I want only one thing: to get better and be out of here as soon as possible. You can traumatize me and worsen my symptoms and keep me here too long, or you can work with me to achieve my goal, which should be the same as yours. I don’t see any other alternative.

Respectfully,

Pamela S. Wagner

Now, I think that is about as crystal clear as it can be, no? And indeed, Dr Banerjee, my first psychiatrist LOVED it. Said so, and raved about how complete both were, both the PAD and the online medical history which he downloaded, printed out and brought with him to our first consultation. So what happened? YOU tell me! I will write more about what I think happened later. I am still trying to figure it all out.

Health, Life, Schizophrenia

“Lady Quixote” on Recovery from Hearing Voices

January 8, 2013 Phoebe Sparrow Wagner 2 Comments

Today I have a guest poster, someone who has been contributing a lot of comments to my blog and who wrote one that I thought deserved a post of its own. Without a lot of introduction, since she tells it pretty much as it is, I offer the following: one brave woman’s unique and amazing recovery story.

From “LADY QUIXOTE”:

I believe it is a normal part of grief to have moments of hearing and seeing those close to us who have died. This is true of our pets, as well as the people in our lives, who have recently passed on. I’ve experienced it, as have many people I know, most of whom have never been diagnosed with any kind of mental illness.

What I don’t know, of course, is whether these experiences are “real,” meaning do they exist independently of our own grieving mind? I believe that at least some of these ghostly grief visitations may be real. The reason I think this, is because on two separate occasions, with two different deceased loved ones, my paranormal experience was witnessed and experienced simultaneously by other people who were with me at the time.

Life is a mystery. Death, even more so.

When I feel that someone who has recently died may be trying to communicate with me in some way, I tell them that I appreciate their caring enough to contact me, and that I miss them and hope they are in a wonderful place where I will join them someday – but to please refrain from contacting me again, because it is a “trigger” for the schizophrenia I was diagnosed with in 1967. I have not been bothered with continual voices since 1969, and I don’t ever want to go back to that miserable real-life-nightmare, again.

In most cases, when I make this request, the “visitation” immediately and permanently stops. On the rare occasion when it has not stopped, I prayed to my Creator for help and protection, and I also studiously ignore the voice or vision, and in every case it soon stopped.

My voices started when I was 14, shortly after my paternal grandfather died. His spirit seemed to visit me twice, the first time immediately after his death, when I was sitting at my desk in school and had no idea that my grandfather was about to die. Suddenly, I “knew” he was dead. It was so real, that I started to cry, right there in the classroom. When I got home from school that day, my mother met me at the door and said, “I have some bad news…” I stopped her and said, “I already know what it is, my Grandfather ‘R’ died today.” She asked me how I knew, and I said I “just did.”

A few months later a friend of mine introduced me to her Ouija Board. She said it was a tool for contacting the spirits of the dead. I had never heard of such a thing and was eager to try to contact my grandfather through her Ouija Board. We seemed to have success in contacting some kind of spirit, but whatever it was, it wasn’t my loving grandfather

My friend who owned the Ouija Board then decided to hold seances with me and some of our other friends, but nothing much came out of those, except that one girl starting screaming at the top of her lungs during one of the seances, saying that she saw a horrible vision. But no one else could see whatever it was that had her so terrified.

Around that time another school friend told me he had heard about the seances I was involved in, and he loaned me a book which he said gave excellent instructions on how to contact the dead. I don’t remember the name of that book, but it should have been entitled “Spiritism for Dummies,” or better yet: “How To Become A Schizophrenic in 5 Easy Steps!”

That book gave point by point instructions for things like “autonomic” (spirit) handwriting, and also on how to become a medium, so that spirits could use your body and your mouth to speak through. Good grief, what was I thinking when I went ahead and followed those instructions? I really must not have been very bright, when I was 14.

So, naive me, I carefully followed the book’s instructions and put myself into a trance, then I called forth the spirits, and – lo and behold – suddenly my hand was writing words all by itself, and the next thing I knew, I had a head full of loud voices that would not shut up even for a second. My only escape from the nonstop circus in my head, happened when I was asleep. During my waking hours, every moment was a real-life NIGHTMARE.

I begged the voices to PLEASE go away, go back to where they had come from. But they just laughed, cursed, and mocked me. Sometimes they told me to kill myself if I didn’t like my life anymore. They even told me to pray to Satan, since praying to God didn’t seem to help. Truly, I was in a living hell!

In desperation I went to my mother and told her about the Ouija Board, the seances, the How-to-be-a-Medium book, my “success” with autonomic spirit handwriting, and the visions and the voices that would not leave me alone. I desperately wanted help to get rid of those maddening voices, because I couldn’t even go to the bathroom without a crowd watching, mocking, and commenting! I couldn’t have a private thought without a multitude listening to it, and commenting and mocking me for the silly 14-year-old things I thought about! I asked my mother if she knew what I could do to make the horrible spirits go away?

My mother responded by making ME go away. Although I had never tried nor threatened to harm anyone, myself included, she immediately put me into a mental institution. The year was 1967, during that era when the answer to mental illness was to drug you up, lock you up, and throw away the key. My mother assured me that I would only be in the institution for a few weeks, until they made me well. But right after taking me there, as I later learned, she went home and took every item I owned to the town dump. I was never supposed to come out of the insane asylum, you see, because the schizophrenia I had been diagnosed with was “incurable.”

One of the other young teenagers involved in our seances, also ended up hearing voices, seeing visions, diagnosed schizophrenic, and committed to the same insane asylum. He had been trying to contact his mother, who died when he was six.

After nearly 2 years in the asylum, a social worker who saw me periodically because of my young age, asked me why I was there, when I always “seemed” so normal? (I was asked that question a lot, because I was not one of those who went around behaving oddly. I never talked aloud to my voices; I had no need to, since they could hear my thoughts, anyway.)

I told the social worker that I heard voices, and she asked me how the voices had gotten started. So I told her all about the Ouija Board, the seances, and the book on spiritism that had taught me step-by-step how to put myself into an hypnotic trance and contact the dead.

Then this brilliant social worker said, “Well, it seems to me that all you did was hypnotize yourself into hearing voices! You’ve seen hypnotists on TV, haven’t you? How they can hypnotize a person into believing something ridiculous, such as that they are a dog, and the next thing you know that person is barking and behaving like a dog? Then the hypnotist gives them the suggestion that they are no longer a dog, that they are themselves again, and they instantly revert to their normal human behavior. Why don’t you try hypnotizing yourself once more, and while you are under hypnosis, tell yourself that the voices are not real, and that when you wake up, you will not hear those voices, ever again.”

I went back to the ward, got into my bed, and did what she said. I highly doubted it would work, because the voices seemed as real to me as anything – how could I make myself believe via hypnosis that they were not real, when I “knew” better? But, I went ahead and tried the self-hypnosis-reverse-suggestion like my social worker had advised me to do, and…. IT WORKED! When I woke myself out of my self-hypnotic trance, the voices were GONE! There were only a few, very distant, occasional “echoes” of “little voices” now and then, for a brief period of time, but they were so quiet and intermittent that they were very easy for me to ignore, and soon even that stopped.

In this manner I have been free of voices, 99% of the time, since 1969 when I was 16 years old. I have also not taken any anti-psychotic medication since that time. The only exception to my not hearing voices is, like I said at the beginning of this long-winded post, when someone close to me dies. But in every case, I handle it by telling them to please leave me alone, with a brief explanation of why I need for them to leave me, and most do so immediately. Those that do not comply with my request, quickly go away after I pray to the Lord for help, and then I tell the voices to “get behind me,” and after that I ignore them until they get bored enough, I suppose, to go bother someone else. 😉

Today, my residual “mental problems” have to do with my chronic PTSD, general anxiety, and an occasional dark depression. I am in therapy for those things, and I also take a low dose of an antidepressant and an anti-anxiety medication. But I have no schizophrenia, and no psychosis of any kind, not in over 40 years, YAY!

I shared my story here in the hopes that it may help you in some way. You are someone I feel very privileged to call a friend, and I feel sad when you are having a rough time.

Art, Health, Mental Illness, Recovery

Doing Art to Save My Sanity

November 27, 2012 Phoebe Sparrow Wagner 4 Comments

They Love You So Much, You Hate Yourself... — THey Love You So Much, You Hate Yourself… © Pamela Spiro Wagner All rights reserved
This one you have to look a little closely at to see what precisely is going on…It isn’t obvious at first glance…

Picture of Health? — Unnatural Still Life or Natura Morte, as the Italians call it. Not your typical fruit bowl, I leave it up for interpretation, but will let you know that the two aqua items are from left to right a packet of Bugler cigarette papers and a bugle cigarette roller. © Pamela Spiro Wagner All rights reserved

Green Hands — A left handed doodle © Pamela Spiro Wagner All rights reserved

BioHands 1 ©Pamela Spiro Wagner All rights reserved

A left handed doodle © Pamela Spiro Wagner All rights reserved

BioHands 1 ©Pamela Spiro Wagner All rights reserved

BIOHands — BioHands 2 ©Pamela Spiro Wagner All rights reserved

Three Catboats, in cove, in mist — Three Catboats in cove, in mist. ©Pamela Spiro Wagner All rights reserved
This one was inspired from a photo but is not a copy, done in colored pencils and oil pastels.

As I have been having a hard time dealing with things, I do art and do art and do art…It is as good a way to cope as any other I suppose. Anyhow, I hope to get back to writing here soon. In the meantime, I am investigating more about temporal lobe epilepsy and schizophrenia/bipolar illness. It seems to me very significant, and at the same time strange that so many people who bear the diagnosis of schizophrenia and/or bipolar are also supposedly burdened with yet another condition that is so tricky to pinpoint, so I may also be posting more about that in the future as well.

The more I read the less I am convinced that schizophrenia, as an entity, exists, one, and two, that if there is any such thing as “schizophrenia” no one has yet figured out what it is. Which is the same thing as saying it is an imaginary/artificial illness. Don’t get me wrong: I am not saying that mental suffering and psychosis do not exist, only that no one has proven, not to my satisfaction, that there is any such illness constellation that can go by the name of schizophrenia and be recognized as such by a preponderance of physicians world-wide… That offers a lot of leeway by the way. I don’t ask for a lab test or even a set of hard signs. Only a reasonable way for psychiatrists around the world to agree on symptoms that constitutes a recognizable disease that is the same thing no matter where you go, just as measles is measles and the flu is the flu…

But there won’t be any agreement, as we know. Because schizophrenia is a cultural construct. It is imaginary and largely meaningless. Except within the society that uses it as a concept in order to disapprove of and stigmatize certain ways of being, speaking or thinking. In that sense schizophrenia is more than just a construct or concept it is a social tool. It is a weapon used to keep people in line. In western society, if one doesn’t keep to the obligatory path, some semi-acceptable social role, the result is the withdrawal of social approvals and the substitution of punishment — think drugs, hospitals, seclusion, restraints — in their place. And yet, in other cultures, the very same “out of bounds” thinking or behavior, rather than being labelled schizophrenic or “crazy” is regarded as the mystic’s path and spiritual, highly regarded rather than anathematized.

This is nothing new. It has been observed before. So why do we keep going back to beating the same old same old drum: “We need better drugs to treat mental illness.” “We need better diagnostic methods to pinpoint mental illness. ” “We need better interventions to help the “mentally ill” who cannot or will not help themselves.”…YOWCH! Yada yada yada. Maybe we continue to bark up the same wrong, wrong, wrong tree. Maybe there is NO SUCH THING AS MENTAL ILLNESS, perhaps all along there has always only been physical illness. Perhaps much suffering, emotional and mental though it may be, is not illness, just part of the human condition, and while we want to ameliorate it, we call it illness at our peril.

More to come.

Happiness, Health, Life, Memory, Mental Health, nature, Reflection, Uncategorized, Writing

Miracles: Four Life Changing Events

October 26, 2012 Phoebe Sparrow Wagner 2 Comments

512px-Common_self-heal_(Prunella_vulgaris)_--_flower_head_closeup — ©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.

Verp MS, Harrison HH, Ober C, Oliveri D, Amarose AP, Lindgren V, Talerman A.

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

–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

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

Useless Psychiatric Mediation and a Poem

May 15, 2012 Phoebe Sparrow Wagner 2 Comments

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

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

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

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

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

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

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

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

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

TO MY PROTECTORS

I came to you fractured,

splintered to syllables,

all-fired to incinerate

the house of my body

where the devil lived.

But I was not nice,

not nice, not nice, no,

I was not nice enough

for balm and kindness,

or to win back my art

or my writing supplies,

so I upended a trashcan

on top of my head

and uniforms nailed

me, naked X, to a bed.

It gouged my brain.

Freight train. Tank.

Two years: still blank.

Nurses, doctors,

thieves: you knew, you

knew. You made of me

pulled pork, long pig

X-posed and pinioned,

not quite a specimen

for your knew the subject

and your objective :

your satisfaction showed

as you struggled to hide

your smiles.

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

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

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

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

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

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

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

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

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

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

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

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

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

“I do, I have!” I replied

“Well?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Health, Mental Illness, Writing

Recovery: A New Definition

January 9, 2012 Phoebe Sparrow Wagner 2 Comments

My comments on this article will follow it. If I can I may highlight points that I particularly wish to discuss.

New Working Definition of ‘Recovery’ from Mental Disorders and Substance Use Disorders

ScienceDaily (Jan. 5, 2012) — A new working definition of recovery from mental disorders and substance use disorders is being announced by the Substance Abuse and Mental Health Services Administration (SAMHSA). The definition is the product of a year-long effort by SAMHSA and a wide range of partners in the behavioral health care community and other fields to develop a working definition of recovery that captures the essential, common experiences of those recovering from mental disorders and substance use disorders, along with major guiding principles that support the recovery definition. SAMHSA led this effort as part of its Recovery Support Strategic Initiative.

The new working definition of Recovery from Mental Disorders and Substance Use Disorders is as follows: A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.

“Over the years it has become increasingly apparent that a practical, comprehensive working definition of recovery would enable policy makers, providers, and others to better design, deliver, and measure integrated and holistic services to those in need,” said SAMHSA Administrator, Pamela S. Hyde. “By working with all elements of the behavioral health community and others to develop this definition, I believe SAMHSA has achieved a significant milestone in promoting greater public awareness and appreciation for the importance of recovery, and widespread support for the services that can make it a reality for millions of Americans.”

A major step in addressing this need occurred in August 2010 when SAMHSA convened a meeting of behavioral health leaders, consisting of mental health consumers and individuals in addiction recovery. Together these members of the behavioral health care community developed a draft definition and principles of recovery to reflect common elements of the recovery experience for those with mental disorders and/or substance use disorders.

In the months that have followed, SAMHSA worked with the behavioral health care community and other interested parties in reviewing drafts of the working recovery definition and principles with stakeholders at meetings, conferences, and other venues. In August 2011, SAMHSA posted the working definition and principles that resulted from this process on the SAMHSA blog and invited comments from the public via SAMHSA Feedback Forums. The blog post received 259 comments, and the forums had over 1000 participants, nearly 500 ideas, and over 1,200 comments on the ideas. Many of the comments received have been incorporated into the current working definition and principles.

Through the Recovery Support Strategic Initiative, SAMHSA has also delineated four major dimensions that support a life in recovery:

* Health: overcoming or managing one’s disease(s) as well as living in a physically and emotionally healthy way;

* Home: a stable and safe place to live;

* Purpose: meaningful daily activities, such as a job, school, volunteerism, family caretaking, or creative endeavors, and the independence, income and resources to participate in society; and

* Community: relationships and social networks that provide support, friendship, love, and hope.

Guiding Principles of Recovery

Recovery emerges from hope: The belief that recovery is real provides the essential and motivating message of a better future — that people can and do overcome the internal and external challenges, barriers, and obstacles that confront them.

Recovery is person-driven: Self-determination and self-direction are the foundations for recovery as individuals define their own life goals and design their unique path(s).

Recovery occurs via many pathways: Individuals are unique with distinct needs, strengths, preferences, goals, culture, and backgrounds, including trauma experiences that affect and determine their pathway(s) to recovery. Abstinence is the safest approach for those with substance use disorders.

Recovery is holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. The array of services and supports available should be integrated and coordinated.

Recovery is supported by peers and allies: Mutual support and mutual aid groups, including the sharing of experiential knowledge and skills, as well as social learning, play an invaluable role in recovery.

Recovery is supported through relationship and social networks: An important factor in the recovery process is the presence and involvement of people who believe in the person’s ability to recover; who offer hope, support, and encouragement; and who also suggest strategies and resources for change.

Recovery is culturally-based and influenced: Culture and cultural background in all of its diverse representations, including values, traditions, and beliefs, are keys in determining a person’s journey and unique pathway to recovery.

Recovery is supported by addressing trauma: Services and supports should be trauma-informed to foster safety (physical and emotional) and trust, as well as promote choice, empowerment, and collaboration.

Recovery involves individual, family, and community strengths and responsibility: Individuals, families, and communities have strengths and resources that serve as a foundation for recovery.

Recovery is based on respect: Community, systems, and societal acceptance and appreciation for people affected by mental health and substance use problems — including protecting their rights and eliminating discrimination — are crucial in achieving recovery.

—————————————————————

At first, I admit, I read the basic definition of recovery and was unimpressed, in fact massively under-whelmed. All I could think was: “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” pretty much describes how anyone should live life. What is so unique and different, I wondered, that this should say anything about recovery from mental illness or substance abuse or that we should care about it? I almost threw up my hands and neglected to finish the article, which would have been a pity as it was worth reading, even if some of the conclusions were a little “pie in the sky,” given the economy and current attitudes towards “entitlements” and public services.

Health, Home, Purpose, Community. Four essential supports for anyone who is attempting to sustain recovery. But as the red words make obvious, it is hard to have a safe and secure home when you don’t have a job, and it is impossible to find a job when you have never worked before and are only just now entering the workforce years late, even as so many others, vastly more experienced, are being laid off. So without those, independence, income and resources go out the window, and with them often go the hope that things can change. Surely if this is often the case for “normal” people, we should expect it also for those with substance abuse problems or mental illness.

Poverty is draining, mentally, physically and spiritually. And it does not foster recovery. But it is a fact of life for many of those with addiction problems and/or mental illnesses. As so many researchers, sociologists and psychologists know, raising oneself from poverty, even in good times is difficult. In hard times such as these, unless you happen to be lucky enough to have a family with resources (in which case you are not truly poverty-stricken) or to reside in safe subsidized housing with enough foodstamps to live on, you are out of luck. How can anyone expect recovery to blossom in such circumstances as hunger and homelessness, not to mention a lack of medical care and medications…But I agree, if health and home can be obtained, then purpose and community can be sought, and the four are indeed recovery’s under-structure; without any or all of them, a person’s stability is easily undermined.

I really liked the guiding principles of recovery, though. Hope is the sine qua non of recovery. If you do not believe that you can get better, do something, feel better, then you will never get there. It once helped me, I thought, that others had hope for me, kept hope alive when i had no hope. And perhaps it did. Because it kept me alive, at a minimum. But it did not help me recover. It was only when I started to feel some hope of my own that recovery began to be possible. In fact, I believe it was only when I began to take up art, teach myself something new, and discovered a brand new interest, talent and passion, that suddenly something opened up in me, in my brain and heart and soul, and hope sprang forth. I had a purpose. I had a purpose, for the first time in decades. I had always had writing, but somehow this was different. For a long time I wasn’t sure why. Then it occurred to me: even if I was only drawing at a table, it was physically active, which meant that it woke me up rather than being dependent on my being sedentary and staying alert. That was the first joyous thing about art: it stimulated me, it kept me awake rather than by its sedentary nature putting me to sleep. I loved writing, never get me wrong on that, I used to love reading when I could attend to books, but because of narcolepsy it was so terribly discouraging that whenever I sat down to write or read I had to battle daily the demon of drowsiness. No matter what I did. Nothing ever helped for long, not even Ritalin. Not, exercise, not diet, not sleeping at night, not, well, nothing. I found Zyprexa such a miracle drug, one that helped me attend and read, but that, that was so sedating in and of itself, that without mega doses of Ritalin, I could barely stay awake to read a few pages.

Somehow, though, art found me, and with it hope was roused. Simple as that.

Or maybe not so simple. First of all, I had to give myself permission to do art. I had to say, it is okay if I don’t write all the time, art is “just as good” as writing, even if my father looks down on it. Many people think art is even better than writing! And I do not have to live to please my father, god knows, though his capacity for devastating judgment is ever mauling my shoulders like a great lion. But what he likes and values, are not absolutes, they are opinions not morals. He is not god, God knows, and I do not need to listen to or absorb what he tries to get me to take in, subliminally or explicitly.

As the next Recovery Principle implies, recovery comes from within, is person-driven, so I had to tell myself that no one could tell me how to do my life but me, and if art kept me alive and awake, so be it. Maybe it wouldn’t be his choice, but so what. It wasn’t his life either, was it?

Recovery cannot be coerced or compelled, only determined by the individual. I would add that treatment too ought to be person-driven, person-determined. That treatment, in-hospital or out-patient should NEVER be coercive but person-centered and self-determined. Why? For the same reason in both cases: It works best that way. Coercion never works; it may appear to but it only breeds trauma and ill will and resentment. It doesn’t foster either health or recovery. Period

However, that Recovery is holistic? While I agree, I had to laugh at the following: “The array of services and supports available should be integrated and coordinated.” I dunno about the “array of services and supports” in your state, but around here there ain’t no such thing…I mean, there are very basic services, like Foodshare and the Food Pantry and hospital inpatient units. But aside from that, and the visiting nurse service that provides/assures medication administration and that grows more precarious every month, I dunno about anything that counts as an “array of services and supports” in this state. I do for myself because sure as shooting the state isn’t going to provide it. Array of services and supports, my eye! You get an appointment for medication every 3 months, in a clinic, and that’s it. And as for integrated and coordinated? What a joke. Who is going to do that? That is like the Centers for Medicare and Medicaid setting new strict regs for seclusion and restraints, and making accreditation of hospitals dependent upon their proper use, and then when it comes time for their yearly review, the psychiatry service isn’t counted or even looked at. Anyhow, I am digressing more and more as I go, I apologize.

Finally, as you know if you have followed my blog, I have had many words to say about traumatic experiences, so I am appreciative of these principles taking the role of trauma into account. If I may read between the lives, since they are talking about “services and supports” being “trauma-informed” perhaps they do mean to speak to the seclusion and restraint issue, as well as the fact that many people have been traumatized and should not be coerced or re-traumatized by treatment. The final passage about respect, however, says it all. No one would have to say a word to anyone providing services and supports about being trauma-informed, if only those needing treatment for substance issues or mental illness had always been treated with respect and dignity.

My apologies for the ineloquence of my writing today. I am coming down with a cold and am not writing up to par. Perhaps the next time I will be back to my usual self.

Art and artwork, Drawing, Hospital, Psychiatric Unit, Trauma

Trauma: Exposure Therapy or Salt on Wound?

November 24, 2011 Phoebe Sparrow Wagner 4 Comments

Caveat Lector or Warning to the Reader:

Although it is only 10:30pm, I seem to be falling into dreamtalk as I write this…I must be sleepier than I know, and half asleep or falling asleep every so often as I write. I say this because I came to a couple of times already, only to find a paragraph of weird gobbledygook on my post. If this happens again, and I do not recognize it until tomorrow, forgive me for sleeping and writing this with the consciousness of a bad dream only. I plan to proofread this entire thing tomorrow, just to vet what I did write.

The subject of this post says it all. I have been exposing myself to “the problem” ruthlessly for months now, and to no avail. I still suffer from the same symptoms of what would be PTSD (had not the good doctors redefined the word “trauma”) and I cannot in truth say that they are any better. Yes, I do remember a little bit of what happened, more than I did before (for those who do not understand the reference, see my Oct 7, 2011 post titled “Psychiatry and Authority: Restraints Update”). At least it can be recalled to me by other means and I can assent to it with some sense of Yes, I do remember that happening…But as to the tears and trembling and heart racing etc I see no improvement, and if no- improvement after these many months of self-treatment is less than to be expected, then I would say that not only has exposure therapy not helped me, it has made things worse. Rather than being literally therapy, it has only added “insult to injury” or as I put it, laid salt on the wound.

I do not know what to do about this. I find myself irritable, even irascible, especially with family members who I believe did not care enough to rescue me from the clutches of malignancy when they knew it was going on. Indeed, they in fact did not either care or do so. But that is the same old story and I can beat myself over the head with their inadequacies as family members, or I can simply wave them away as inadequate in such matters and go on…Ah, but how to go on? How do I continue to live despite these horrendous feelings and constant on-the-verge tears? Even Dr C seems at a loss, though I am not sure why. Surely she must have dealt with trauma — or “trauma-like situations” (since this wasn’t Katrina or the tsunami, so by definition it wasn’t trauma…) before now. Surely she ought to know what to do about this situation. Why then does she seem so helplessly unable to tell me what to do or to help me get over this? Why won’t she give me any advice or help? I can barely go on some days and yet she never offers anything but a mirror to myself, to what I might think or feel. I tell you, I can hear the professional technique in her voice sometimes, even as I fall for it.

Yet I really like her and I don’t know why. Is it because she does NOT order me around the way Dr O did? Is it because she is NOT authoritarian and directive the way Mary was? I dunno I just know that she listens to me and takes me seriously, does not consign every idea I have to the dustbin of delusion as Dr O (Mary) did.

Nevertheless, I still do not know what to do or how to get over this problem, and even though the OPA has decided in my favor and is sending my case on to the the Dept of Public Health for further action, even that doesn’t relieve me or help my anxiety and anguish abate. Why should it? What is done is done, and the consequences are as they are. My problem is how to go on, how to survive, how to deal with the result and get on with life. But so far I have not figured out how. Despite my talk of forgiveness and acceptance, I have not reached that state yet, not perfectly, not even adequately. If I had I would not be so torn apart. I believe in forgiveness as the healer of all, but when push comes to shove, I cannot seem to take my own advice any more than most other people can.

Yet I see that I resent so very much and it does not all have to do with the restraints issue. Some of it is much larger and concerns a general anger or resentment towards how certain people and family members have treated me over these past decades, issues that have not even yet been resolved. This — my anger — doesn’t endear me to anyone, and it solves nothing to go there, to decide and then rage against whoever did “this” to me.

I do go there, of course, or I wouldn’t be complaining of how they tortured me. I torture myself with these things. And I get irate and start sobbing and write angry emails that likely no one understands the genesis of, though I make the assumptions that they will be obvious to the person on the receiving end. Yet the grievances are real. It is just that it is useless to bring them up, not so much with others as for me. What good does it do to cry over what happened twenty or thirty years ago, even if it continues to happen now with the same person? I ought to have learned something over those intervening years and that is that the person is not going to change and that their injurious nature, their manner of hurting me is going to continue no matter what I do or say to them. Either they do not care or they simply have no idea or understanding of the impact of what they do or say (or do not do or say) has on me. But in the end it is I who must continue, must soldier on, and I should have learned to do so without their support or confidence.

I have, I have. It is just that a little improvement in things fooled me yet again into expecting real change, a real difference, a genuine affection and positive behavior towards me. Instead, in both cases, I get the same old, same old, just dressed up in affability and pretend benevolence until I cross them. In one case, it is egregious, and the reaction is fury, the greater the truth I point out, the more massive the indignation and rage. In the other case, the sheer oblivion to the hurt caused is cause for massive hurt itself. And both people continue to pang me today, either on purpose or because they cannot help it. In the one case, I believe it is in fact deliberate. In the other, perhaps not so, but from personal weakness. I can try to forgive the latter, but the former is just too galling and it behooves me to stay the hell away from that person…as that is the best I seem to be able to do to protect myself at this point.

Well, without respect to the above discussion, which was vague in the extreme because I do not believe I have real privacy here and you never know who might linger around to read, despite all that, I want to show you a new piece of art I did over the last two days. As art it is nothing, though it is the first time I have attempted a scene with multiple “characters” actively engaged in physical activity, so in that sense it was st least personally challenging. But the scene itself may be instructive, if horrifying to some people.

I am only going to post the initial sketch and the final version, plus some details from the drawing as it is good to get a closer look at parts of it that a monitor-size photo cannot give you. The original is at least 24″ by 17″ so it is reasonably large and has room for more details than my usual 11″ by 14″ drawings.

Just had to erase a paragraph of complete “dreamtalk” here, and fearing that I may descend to such incomprehensible language again, I will hereby cease and desist in the verbal production department and just upload the two photos. First the sketch and then the final colored pencil product. Both are very closely connected with the trauma that I wrote of at the outset and the drawing was part of my next attempt to “expose” it out of me. Whether it did or did not, I will find out on Jan 6 -9, 2012, when i go back to Wisdom House to write for the weekend. If I cannot do more than continue in this vein, then I will have an idea of how little I managed to help myself. But I am hopeful that this will finally prove to be a working solution — to draw what happened on paper but then to write about dealing with my anger and resentment and other feelings, which is really what is important at this point, not with the “mere” facts of what happened. If it is, I will be very proud of resolving at least part of the problem on my own.

First of all, I’ll post the sketch, as it will print out above the text as follows.

Restraints sketch — Who is Smiling at this Image of Torture?

A picture in graphite and later in colored pencil depicting with absolutely accuracy the sort of thing that a “take-down” by a hospital goon squad can entail before they force a person into four-point restraints. The nearly naked person in this depiction is, of course, me at a certain hospital…I am afraid that as I look at this version (correctable) the smile has turned into a grimace on the face of the white woman in the foreground. THat needs to be tweaked a bit…I also note that there are NO SHADOWS… But this is almost more of an illustration than a real drawing, so I will forgive that lapse. Next to come I hope will be a painting.

Here are some photos of details:

I realize that it looks like “I” am lying both on my back and on my stomach, but that is an illusion of the photo. In reality those are the backs of the legs, not the front.

Enough for now. I need to wake up and then I want to discuss the book, ANATOMY OF AN EPIDEMIC. Perhaps in my next post.

Acceptance, Art and artwork, Collage, Forgiveness, Health, Mental Illness, Psychiatric Unit, Recovery, Seclusion and Restraints

Photos from “Reflections on a Psychiatric Seclusion Room”

October 22, 2011 Phoebe Sparrow Wagner 1 Comment

Reflections on Psychiatric Seclusion and Restraint Room — Reflection of Seclusion and Restraint : There is hope and freedom somewhere.

NOTE: this is a link to the finished collage, sans border of which I have no photo: https://wagblog.wordpress.com/2011/11/13/reflection-on-room-101-in-ward-d/

I now call this Reflections on Room 101 in The Ministry of Love, as a reference to Room 101 in the book “1984” by George Orwell. The place where recalcitrant prisoners faced torture with the things they feared most in the world.

I want to post today some photos from the progress I have made on my large collage of the restraint room (seclusion room) in a psychiatric unit. I must say that it gives me the shakes whenever I work on it, or at least whenever I look at it afterwards, and certainly when I photograph it. But I think that the fear and heart-racing palpitations are slightly diminished compared to this time a month ago. Possibly. That is what I am hoping for at any rate. The process of doing this is my attempt at “exposure therapy” I suppose, because I cannot live with what feels like PTSD any longer. (I know, I know, according to the New Rules, you cannot, by definition, have PTSD unless your life was mortally threatened; unless you experienced a tsunami or earthquake, mass murderer, or Hurricane Katrina, it does not count as “real trauma,” so say the doctors, and they should know, right? After all, they are the ones who defined the illness, and keep redefining it, and who made it up! Well, since they have the initials MD after their names, standing for Missed Diagnoses, I dunno if we can trust them on anything as important as deciding for us what it is that counts as traumatic. It seems to me that WE ought to be the ones telling THEM, no?) Be that as it may, let me change paragraphs and resume the discussion I left off so abruptly above.

Whatever the case, I do suffer with heart-racing fear and sweats and tremors that make it difficult even to take a clear photo of the collage after working on it but whether it is PTSD, I care not. All I care about is 1) communicating the experience, or at least what the rooms look like, and 2) purging myself of the residual fear.

I don’t want to go on any further with that. It truly does cause me great anxiety. And I prefer to work on the collage and on forgiving the specific people who did those things to me. It is likely that they had grown to hate me, forgetting that I was a troubled and profoundly ill person because I was also loud and frustrating and violent…(treated with violence didn’t make me any more docile, I might add). So things only escalated and escalated, when from the start their goal was to have a quiet unit that ran smoothly and had everyone get discharged in a matter of days, no questions asked. They did this by helping no one, by talking to no one, and by questioning no one. All they cared about was making sure that everyone stayed “safe” for as long as they were in their clutches. And that they would say so until they left. BUT I said I was working on forgiving them, and trying to see them as tired human beings, flawed but human. It does me no good to get all riled up again.

so I will leave it here, with the photos of the art. I will add only that I plan to redo the curtains, since as it is the blue competes with the sky. Also there will be a curtain rod, and such…But as you can see, it is still a work in progress!

Now you can get a better idea... — You see the mirror now, and the bed with the restraints? The garden below the window?

What the mirror outside sees in this room, locked from outside the inside... — No those are not “banjos” on the bed…Look closer. This is a psychiatric unit…

Mirror is real... — But so is everything it sees and reflects…

There is Freedom Out There — Behind the mirror, beyond the window, an open garden gate…

Art and artwork, colored pencils, Drawing, Hartford, Mental Health, Recovery, Schizophrenia

ART SHOW IN HARTFORD

October 10, 2011 Phoebe Sparrow Wagner Leave a comment

Open Studio Hartford is a Hartford regional event that celebrates the arts!

This celebration of the arts combines art of all types and presents it to the community. For a full weekend in November, artists open their studios to the public or show in Hartford locations. Their wish is to inspire the community, make others aware of their work, and sell their art. Visitors enjoy the opportunity to meet local artists at studios, galleries and creative spaces in and around Hartford to browse and buy locally created art. The public also experiences live artistic entertainment at some locations!

2011 Opening Reception & Kick-off
Thursday, November 3rd, 6pm – 8pm
ArtSpace Gallery, 555 Asylum Street, Hartford, CT 06105
This year’s theme is “Double Digits”.
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District
The reception, featuring live music, will be produced by Artists in Real Time, Inc. and sponsored by local restaurants.

22nd Annual Open Studio Weekend in Hartford
Saturday & Sunday, November 12 & 13, 11 AM -5 PM
A self-guided tour of creative spaces that has taken place annually for 22 years, Open Studio Weekend is a creative showcase for local artists, produced by the nonprofit 501(c)3 organization, Artists in Real Time, Inc. Locations are open around the city and greater Hartford Region; thousands of attendees are expected.
FREE Event!
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District

Needless to say, I think, I will be exhibiting my artwork here, some of it about schizophrenia, some of it from schizophrenia, and a great deal of it about and in recovery. If you are able to attend, look for me on the 4th floor of ArtSpace, Hartford. Hope to see some of you there!

Amnesia, Art and artwork, Book, Collage, Memory, Natchaug Hospital, Psychiatric Unit, Seclusion and Restraints, Surrealism, Willimantic Connecticut

Artwork from Hospital

September 27, 2011 Phoebe Sparrow Wagner 1 Comment

Open Window and Outside Mirror — If the window is open, what does the mirror outside see inside the room?

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

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

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

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

ALS, Art, Art and artwork, Drawing, Health, Uncategorized

Imaginary Interior with Mirror and Red Chair…plus

February 5, 2011 Phoebe Sparrow Wagner 2 Comments

Here is a colored pencil nighttime interior, wholly imagined and done without model objects to work from except that the red chair happens to be one that “lives” in my room. You may not be able to tell, but the large mirror on the table reflects one that is meant to be implicit behind the person drawing (the hand in the foreground) which in turn reflects the one on the table, and that reflects it, and so on…). Also, on the table is a photo that purports also to be, and is in fact, one of the artist — me — drawing as well. So you see there are a lot of tricks involved, though I do not think the picture is very expert. The perspective was not meant to be accurate, by the way. It is sorta folky…I simply am trying things I have never done before, like furniture and scenes. After all, you have to start somewhere.

I am also working on learning “realistic pencil portrait drawing” which is equally difficult but in a different way as it involves minute observation and challenges my eyesight too, at least at the moment. In fact, learning both skills are good for me.

I wrote a new poem two nights ago, but alas, I cannot share it here yet as then I could not submit it to a journal. I can only advise those interested in my poetry who have not read it and who have not seen my book WE MAD CLIMB SHAKY LADDERS, to check out the page I have set up (see above) with a number of poems taken from it. I you like those you may also be interested enough to perhaps purchase a copy (and make me a wealthy — hah! — woman in the process). I am hoping eventually to find a publisher for LEARNING TO SEE IN THREE DIMENSIONS, but I admit that I haven’t really tried. In fact, I have been so busy that I haven’t tried at all! I just keep writing and adding to it.

Anyhow, I do not know how many of you know of my best friend, Joe C, (the old blog readers did) but he is dying of ALS, Lou Gehrig’s Disease, after 4 years, 3.5 of them approximately, on a ventilator ( that is to say breathing by means of a tracheostomy tube attached to a mechanical respirator). I do not know how long he has, though the situation is really dire in a way that is difficult to talk about. He refuses to agree to a Do Not Resuscitate (DNR) order, though there is nothing they will be able to do for him except torture him if he does not…Oh god, he is in such awful straits, yet so wants to live! It is so tragic… The only good thing right now is that Dr O, that wonderful woman and my former psychiatrist, who was so kind and helpful to him, and of course was to me for so many years, was ordained a minister after she moved away from CT and she is going to visit him tomorrow, if she can…and see if she can help him.

You know, my absolutely biggest fear for Joe is not his dying, but of his being afraid, and that is where I think she can talk to him in a way that he will profit from, because he listens to her, and always has, in a way that he never has listened to me.

Joe basically responds best to female authority figures, which is strange given that he has a terrible relationship, really none at this point, with his mother. I no longer mind this, I am used to his not taking what I say as having any merit. But if Dr O is able to help, I just want him to get to that place where he can accept his approaching death and is not scared…

All this is by way of saying that if I am silent here for a while, please think of Joe and of me, and send him your prayers? Thank you, all of you.

I am putting up a photo Joe and me just after he was diagnosed, when we were at the Lahey Clinic for one of his appointments there, and then one of the few that I have with him at the hospital where he currently lives. One when he was still able to smile. You will be able to see the extreme changes in him, but to me, I have always only seen the “same ole Joe!”

Pam and Joe 06 — Joe C and Pam in 2006, December

Joe inbed:pam — Joe and Pam November 2007

Lyme Disease, Mental Health, Psychiatric Unit, Psychiatry, Seclusion and Restraints

Natchaug Hospital Stay and Comfort Room

January 19, 2011 Phoebe Sparrow Wagner 3 Comments

I have been away since December 17^th, in the hospital yet again. This time the experience – at Natchaug Hospital in Willimantic — was vastly better than the previous two and not abusive at all. I want to tell you about this, but first let me go back to what happened to get me there.

In the beginning of December I began to have trouble again. The “people” came back with their jeering and mockery and commands. A general confusion assailed me. In my journal I recorded many “cries” of MATOOTAM! : “Kill the Ogre that Ate Manhattan” which many of you know means me. I also began to burn myself under the influence of those command hallucinations. I still believe this was all a Lyme disease relapse, but I had been on antibiotics previously for 8 years – with positive tests for Lyme and other tick-borne illnesses intermittently during that time — without being cured, so there was and continues to be nothing but symptomatic treatment. This means, as my new psychiatrist, Dr C, argues, at least temporary use of the hated, and loved, atypical antipsychotic, Zyprexa. I already am taking Abilify and Geodon, as well as Lamictal for mood stabilization and possible temporal lobe seizure activity. However, as has happened before, these were not effective enough to carry me through such a crisis, which is why I was encouraged to take Zyprexa, 20 mg to head off anything worse. Despite my resistance – I really hate the immediate increase of appetite and weight that accompanies taking it – I did so, I assure you. But the damage was already done and the crisis took on a life of its own, so to speak. By mid-December, I was no longer “safe,” the code word my visiting nurse among others uses for my listening to the commands the “people” give me. She didn’t know how true that was, though, until I finally admitted it after four days of what I will only describe as obedience to those same commands. I saw Dr C that Thursday, and though she was uncertain of my safety, she decided that I would talk with her every evening until I saw her again the following Tuesday.

The truth is, I do not really recall most of this, neither intellectually nor emotionally. I have had to be told and to refer to my journal in order to recount all of the preceding. However, I do remember what happened next. In addition to the reappearance of the People, I began to experience what I called “brain blips.” These were very brief episodes in which I felt as if my brain suddenly did a somersault, a little like the feeling when your heart skips a beat, except that it was in my brain and accompanied by a terrible dread and feelings of impending doom. After the fraction of a second in which the blip occurred, I would come back to myself – it felt as if for an instant I lost consciousness, but the blip was so very brief that it didn’t seem possible. These episodes were terribly frightening, even though nothing ever happened during or after them, not at least of the dreadful sort I feared.

That Friday evening, my heart racing and my mind itself awry, I was in another world, so confused that I wasn’t quite sure what was going on. I managed to call Dr C, who prescribed Ativan. It was too late to call the nurse to pick it up for me so I got in the car to drive the mile to CVS but as soon as I pulled out of the parking lot, the other world took over completely. I do not know how I actually got to the drugstore. I recall only that I could barely hear or see for the pandemonium in my mind but that I was aware enough of the danger to drive only 20 mph the entire way. Once there, however, I didn’t know what to do. I didn’t know how to get home and I forgot about getting the Ativan altogether. Somehow I managed to tell the pharmacist that something was wrong, that I couldn’t drive home, but she thought I meant that the car had broken down, and called a cab for me. I went outside to smoke a cigarette and wait for it, but I was so scared of the shoppers who came and went – the drugstore was open 24 hours a day so anyone in the area who needed something after 10pm came there – that I was unable to take more than a few drags, hiding behind a pillar. I returned to the pharmacist and whispered that there was something terribly wrong, with my brain, that as I felt, bugs had infested it and that I was in another world. Finally she understood and called an ambulance.

I won’t go into the drive to the ER except to say that I was so “out of it” that I wasn’t even upset that the EMTs made me get on the stretcher right in the middle of CVS and that everyone saw me being taken out of there. Once in the vehicle, I tried to explain to them that despite the large wound they would discover on my leg, there was something wrong with my brain itself, that this was not a purely psychiatric matter and that I needed medical, neurological care. Indeed, I still feel that way, but much good that did. Once a “mental patient” always a “mental patient” it seems. I admit, though, that having burned my leg did not help much. Still, I tried to explain that I needed an MRI of my brain, that something was wrong, a bleed or parasites or something! You can guess their response: of course, they summarily dismissed all of that and quickly had me packed off to the psych section of the emergency room. Although this is a very comfortable, large and separate unit of the ER, with single cubicles for each patient and a TV but also a video camera in each one, I waited 3 days before a bed was available for me, some 25 miles or more away at Natchaug Hospital, a psychiatric hospital in Mansfield Center, in Connecticut.

I name the hospital openly – as opposed to the others I have written about — because it was amazing in so many ways that I want both to sing its praises and to “advertise” it so to speak, to describe what a really good psychiatric hospital ought to be like. It is true that most people were in for a very short time, Connecticut having virtually no long term beds any longer, not even in the state hospital, but whether acute care or for somewhat longer stays, Natchaug was quite simply the best place I have ever been. From the food, to the – well, let me go into more detail rather than a mere summary (though in my opinion, the food was indeed a cut above that in any place I have been in, both in availability, and, with a salad bar at every meal, quality.)

Upon admission there was, to my dismay, a requisite “clothing and body search.” This procedure was done in such a way as to preserve as much dignity and privacy of one’s person as possible but I feared at first that it boded ill for the rest of my stay. Also, I discovered that although there were, I think, two private rooms, I had been assigned a double, a semi-private room, with a roommate already installed. This was upsetting to me, as I had almost always had a single, or been moved to one because the unit staff either felt I was too disruptive or unable to tolerate the stress of a roommate. However, when I saw how the semi-private rooms were carefully partitioned with a floor to ceiling wall in between the bed areas, I was much reassured. Although I eventually did for a short time have a private room, or a double that was designated as private – I frankly do not remember why! – I was not bothered by either roommate that I had while there. The one who did try to get me to – Oh, I dunno. I just am no longer one to “socialize” with other patients and I simply did not feel like getting to know her, or to excessively “sympathize” or otherwise expend my limited energy on her problems. I feel a little bad about this, but this one roommate, the second one, at first tried to involve me in her “stuff” and even left a journal or something next to my bed “for you to read to find out more about me.” Well, this was so very intrusive, and nothing I had asked for at all, that I rudely, but decisively said, “Why would I want to do that?”

I know that I would have been terribly hurt and humiliated by someone’s saying such a thing to me, but on the other hand, I would never have been so forward with a complete stranger either. In any event, she quickly took the papers back and left the room. However, a day later, she seemed to have no hard feelings, and we got along, if distantly at least as well as I wanted to.

Where was I? Well, I will tell you that the worst thing about my stay, and I suppose unavoidable, since I was there over the holidays, was that I had three different doctors for the three weeks I was there. but the best things were two, or more, but two in particular. One was that there was NO seclusion room, that is to say, the seclusion room that they used to have was not only now designated at the Comfort Room, but in fact was comfortable, and open at most times for use by anyone needing comfort. In it, there were thick mats on the floor, a Grandma Moses-like mural painted on all four walls by artist staff members and best of all a “therapy chair.” This is a very large and comfortable rocking recliner that is built in such a way as to elevate your legs, while you recline against the back, and let your feet dangle over the end. This allows the person to position the very lightweight chair near a wall so as to be able to lightly touch the wall with the feet and keep the chair rocking with little effort all the while lying back and relaxing. Their next improvement planned is to get headphones, wireless, or MP3 players with a selection of music for additional relaxation and comforting.

I usually tell staff at hospitals that they “cannot keep me safe” and indeed “prove” it by obeying in some fashion the commands the People give me…This never exactly endears me to anyone, and in fact has more often than not earned me a reputation as very difficult, even as having a “borderline personality” as an Axis 2 diagnosis (not true). Be that as it may, I was in fact kept safe at Natchaug, and when I was not, I was on a very helpful rather than punitive 1:1 or constant observation. At Natucahug, one-to-one staff were supposed to talk to me, rather than kept from doing so as at other hospitals, “so that you won’t come to like the attention too much.” The few times I became very upset, screaming, just screaming, at the top of my lungs, and rather than choosing to go on my own was escorted to the Comfort Room, by “staff assist” people (there is no “Dr Strong” goon squad of uniformed security guards), the door to the room was open and someone talked to me the entire time. Thus, when I left, on my own, when I felt calmer, I also felt that the reasons that I had been so distraught were also alleviated.

Also, although Natchaug, like any other hospital, did have a restraints policy, they did not use them a single time the entire three weeks I was there. In fact, though there was a very disruptive, troubling patient there the entire time (for once it was not I) I do not believe they even came close to considering using them. This time I believe it when they said that they almost never have to use them at all.

But the very best thing about my stay was something quite serendipitous: it turned out that the Director of Nursing for the whole hospital is Sharon H, the very same APRN who had been head nurse during my many stays at a Hartford hospital, and who had taken upon herself to supervise my care, or at least seemed to have in some sense “taken me under her wing.” Sharon is, and always was, both extremely bright and compassionate beyond words. She is also insightful in a way that I found the first two doctors I had were not, and if the third was, I did not have a chance to find out because I saw her only 4 times. It is true that Sharon had the advantage of having known me well, if 17 years ago, but still, she seems to have this ability to size up a situation, at least with me, and both to calm me if necessary and to suggest a solution that simply fits…I have to say that I felt especially well taken care of. Sharon made sure she saw me every afternoon, though this was above and beyond the call of any duty.

This description scarcely does my stay at this hospital justice. Although, like any hospitalization, it was not an easy stay, nonetheless I can only say that I cannot thank Sharon and the Natchaug staff enough for all that she and they did for me.

(PS Forgive any typos I have not yet corrected but it is getting late and I am too tired to go back and check for them at the present time…Lazy me!)

Art and artwork, Book, Global Warming, portraits, Psychiatric Unit, Wisdom House, Writing

The Painted Woman, Poem for 350.org, plus yada yada

November 6, 2010 Phoebe Sparrow Wagner 1 Comment

My newest artwork is what I call The Painted Woman, for I think obvious reasons.

It is not meant to be a parody or an insult to any sort of woman, just a study of an overly made-up “older” woman who might drink a bit too much and get loose around the edges when she does. I think it is clear that she has had plastic surgery, though it hasn’t done a lot for her, with her artificially plumped lips, which do not work at all with her boozy aged face that the exaggerated make-up only serves to enhance in the worst sense of the word. If her botoxed brow doesn’t disguise her real age, neither do her drawn-in eyebrows, which is something women do that I never did understand: Isn’t any sort of eyebrow better than the kind that are just a line drawn or painted on? even Frida Kahlo’s eyebrows!

Frida-Kahlo-frida-kahlo-172270_845_1181 — Frida Kahlo, with her eyebrows, of which she was NOT ashamed...She was proud to paint them and did so without shame or trying to disguise them. In fact, she even painted herself with the mustache...

I love those eyebrows, full of character and strength, and the portraits, which could be seen as brave and wonderfully lacking in vanity, I prefer to think Kahlo painted because she saw herself simply as beautiful, eyebrows and mustache and all, and painted herself on that account, not at all “in spite of” her flaws…

That said, I do not believe that my painted woman is beautiful, perhaps for much the same reason that I hope Kahlo felt herself to indeed be beautiful: this, my pictured woman, is not only artificial, she is desperate, pathetic and even tragic…I feel sorry for her, who is, after all, my own creation!

_______________________________________________________________

All that aside, the reasons that I have not written are several, including my having to get that poetry book manuscript rewritten and out by the 15th of October (not that I have a chance to win a contest that is judged non-anonymously, but it does no harm to try, so long as it doesn’t tie the book up for the next 6 months…). Then I had that Life Drawing class at the Creative Arts Workshop, which is still difficult for me, partly because I cannot see well, and cannot translate what I see to a large piece of paper on an easel…I don’t have any difficulty with the gestural drawing, the loosening up exercises, actually, I have more difficulty with the longer drawing periods. The trouble is that I do not want to take the time to do a drawing for only 30 minutes that I know I cannot do in that short a “long” period, and also, I find it hard to stand on my feet for that long. The class is 3 hours long in fact, and all of it is standing at easels, while when I do my portraits I mostly just sit in my recliner or at a table with my paints and canvas on a table or at most at a little broken table easel that I bought at the CAW tag sale and fixed myself.

Nevertheless, it has been a good experience, if exhausting. I drive to New Haven then stay overnight and drive home on Tuesday morning. So the night spent away from home feels like a big deal every week, not just a mere evening away…though I could treat it as such, I suppose.

ALSO, Dr C wants to see me twice a week for the time being — actually for more than just “the time being.” It is a very complicated situation that I cannot go into here, but this 2X a week set-up may not continue, I dunno, I would like to, and I know it kept me out of the hospital in October, but but but…I am simply getting very mixed messages from certain people (decidedly not Dr C) about it, and it is hard to know what to do. I sometimes think that it was easier for people to have me in the hospital twice a year, despite their protestations, than to keep me out if keeping me out entails my seeing Dr C 2X a week. It is certainly less expensive to hospitalize me, since it saves money coming out of their pockets ( I am not a drain on the “system” otherwise, because I do not need public mental health services or ask for anything from those strained agencies, for which fact they ought to be grateful…though not for my hospital stays, of course).

But no more on that subject, which is utterly confusing to me and frightening to boot. I cannot bear the thought of ever being forced into a hospital again, where I am ALWAYS ABUSED and BATTERED by the staff, despite being tortured by myself and my own demons already. Even thinking about it makes me tremble…

Will be returning to Wisdom House in two weeks, for another weekend. I hope to write some more poetry, and perhaps “fix” the ms, by writing up an introduction and putting in some divisions between groups of poems, rather than the vague segues I have now. I thought they were obvious, but others do not seem to “get” why one poems transitions to another…So I will group them better, and put what feels like artificial divisions between them. That way, readers will feel there is some shape to the book, a clumping, rather than a thread that one must follow…

There is much I would like to say, but it is already 2:45 in the morning, so I needs must cease and desist and get to bed. I will try to write as soon as I can, but if nothing else, I promise to write when I am at Wisdom House on the 19-21 of November.

The following is a poem I wrote last year, and put one version here then, after I went to a vigil for the organization 350.org, a website devoted to the cause of getting our atmospheric CO2 levels down to 350 parts per million, because that is the level at which life continues to be possible…whereas if we continue to let it go up, global warming will continue to such an extent that life on the planet will be impossible.

But that said, here is the poem, for what it is worth. If it sounds familiar, it is, but I have also reworked and changed a lot of it…

FRIDAY NIGHT VIGIL

Shivering in the wind, we fight to light our candles
as we gather in the darkness of an approaching storm.
But the icy blow keeps snuffing out each flicker
so we just stand, our signs alone aloft to passing traffic,
standing for the stand we take: for the changing world,
for a last chance at change. We smiling stand for photos,
taken from across the streaming street –
and smile into the night, display our handmade signs.
One car beeps, a driver gives the V-sign in support.
But most drive on without a single word or sign
that they have heard or seen a thing, or even recognized
we’re standing here for something save a hopeless cause.
My hands freeze stiff, release their glass and candle with a crash,
a glint of shards, a splash upon the sidewalk. Someone
with safer gloves stoops to sweep the shards away…
I think, How lovely is the world today, even dying.
Though it’s all we have (and lord knows, it’s more
than we can handle) we stand here in this freezing dark
against the darkness and light one candle.

Appetite, Eating, Nutrition, Schizophrenia, Zyprex

Symptoms, Zyprexa and Recovery Again

October 21, 2010 Phoebe Sparrow Wagner 4 Comments

images — Zyprexa: "The miracle and the monster"

Yes, I am kinda sick of this rollercoaster, myself. But there you have it. If I will not or cannot take the medication, and I have no other choice, what is a person to do? I know it is a miracle drug, yet I fight taking Zyprexa at every possible turn. Why? Because, frankly, I cannot tolerate the enormous weight gain it caused the first time I took it – and for many years, off and on. I simply cannot stand being that visible, eating up so much of others’ air, intruding, in truth obtruding into their space as I do even now…People will ask me questions about some “trade-off” as if it were so easy as that, as if THEY could easily decide, would have no trouble opting to take the drug, and die early from diabetes, which almost a foregone conclusion after becoming obese on Zyprexa. Hell, even without the obesity factor, people develop diabetes on the drug…And that’s only for starters, what about the cholesterol and triglyceride levels that go up and up? Or is that part of the trade off too? That a person with schizophrenia should not care about elevated levels the way anyone else does…

I have mentioned here, I believe, the recent studies that have shown that people with SZ become overweight and obese SOLELY on account of the medications. Without these medications, as a group we would tend to be thinner than the average adult. I have suspected this for many years. It would seem to me that every time I read a memoir by someone with sz, they would tell a tale of being a very slim person, until they were plied with some typical or atypical anti-psychotic, at which point they started gaining weight. Now, it was never clear to me whether or not the old drugs really helped much of anything, except to alleviate a few positive symptoms in some people.

Oh, those who disturbed the peace could be quieted, calmed yes,but no one was cured. I met very few people who wanted to take meds because the drugs actually made them feel better. Oh, perhaps they did, since if one got rid of the hallucinations and delusions of course one would feel better. But for myself the old neuroleptics didn’t work particularly well on either positive or negative symptoms, and the side effects were awful, esp the deadening lethargy the drugs produced. I would never choose to take any of those drugs and I agreed to take prolixin because it was the lesser evil because otherwise, they would threaten me with consequences far worse…But had I had the choice no way would I have chosen to take any of those drugs.

I’m terribly sorry, but I must stop here. I just wanted to get start on someting, but it is 4 am and I need to go to sleep, plus my eyes are so wonky all over again that I can barely see what I am doing, and at times I cannot at all. My eyes are going nuts again, crossing over or going outwards whatever! All I know is the text dances around and I cannot see through the jumble of letters frlying around. It is hard even to figure out which hand is doing what!

Well, enough for now. I hope to be back here tomorrow, but time has a way of getting away from me…

Certainly, the side effects of drugs like Thorazine were problematic enough to begin with. And count weight gain among them. How is it that any doc in state institutions could not see this correlation? But as you know, “there are
none so blind as those who will not see…”

Art and artwork, Occupational Therapy, portraits, Psychiatric Unit

Collage of Christabel: Middlesex Occupational Therapist (finished)

August 9, 2010 Phoebe Sparrow Wagner 4 Comments

Finally I have finished the collage here with the background completed and the candy foil earring (I saved foil from innumerable chocolates…and they have no come in handy as I know eventually they would. What do they say? Everything can be an art supply, looked at with a creative spirit. Who says that? Well, I dunno, I guess I do! 8D

I call her Christabel, who was one of the occupational therapists in the hospital this past April and May (all of the OTs were great.) She was a wonderful woman who was the one person who consistently treated me like a human being at a place where I was often not treated much better than an animal or a bad child. Consequently, I never once, as I recall, had occasion nor impulse to scream at her in rage or frustration. Lkewise she never felt it incumbent upon her to withhold from me such ridiculous items as gluesticks or magazines, the sort of carrots with which the nurses attempted to “tame” me. That is, negatively, by taking them away from me until I ‘behaved’ according to their rigid standards. Never once did they acknowledge what I had begged them to understand from the moment I walked in there, which was that I suffered from Lyme disease-induced schizophrenia, and that both the rage episodes and my impulsivity were uncontrollable, (i.e. literally OUT of my control, and “not me” — as the weekend doc herself, Faye H., who knew me well from treating me for years in the past, noted several times in dismay).

Be that as it may, when the nurses, or one of them, the one who really hated me, refused to grant me permission to use a gluestick one afternoon in order to work on this collage, it was Christabel who came to my rescue, by bringing some from the OT office, without so much as a word or caveat to “not tell the nurses.” She simply handed them to me, along with a handful of new magazines to tear colored scraps from, so I could continue work on my face, which I had only just begun.

Everyone asked me, as it was coming together, if I was modeling it on anyone. But the truth is, though I call it Christabel, it is more in honor of her, than intended to be a true likeness. True, she is African American, and has very close cropped hair, but that is as far as the similarities go. In fact, the face is pretty much imaginary and generic. I took the features from, well, my mind, mostly, though I used various faces from magzines to give me an idea of how the light would fall and create shadows, and how the various contours of the features would look. Also to give me a better idea of proportions. The nice thing about these kinds of collages is that paper is very forgiving, so if I made a huge mistake, and made the nose too big or put the lips too close to the nostrils or, as I did, make the eyes too small and close together, all I needed to do was paper them over and start again. In fact, the more layers I used, the stiffer the underlying “post-it note” kind of thin paper foundation became, which proved a good thing when it came to finishing off the edges and finding a way to hang it. I cannot f rame it, as it is 46 inches by 32inches, approximately, and formally framing it would cost a mint. but I polyurethaned it, one, so it would not distintegrate, and bound the edges neatly, and think I will attach a dowel or piece of thin wood at the top to which I can affix a wire and hang it by that. The person, the woman who runs the solo shows every month at DHMAS in Hartford, said that though everything was supposed to be framed, basically as long as it can be hung by a wire, my plans sound fine.

Well enough of this. I think the new photo shows how I finished the face better. Though I could not get the bound edges into the photo alas.

Mad Pride, Psychiatry, Recovery, Uncategorized, Writing

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

November 21, 2009 Phoebe Sparrow Wagner Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

Lyme Disease, Memory, Narcolepsy, Psychiatry, Recovery, Schizophrenia, Violence

Hospital, Hypomania and How Hope Eventually Returned…

October 31, 2009 Phoebe Sparrow Wagner 2 Comments

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

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

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

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

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

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

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

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

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

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

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

Mental Health, Narcolepsy, Recovery, Schizophrenia, Uncategorized, Vision, Zyprex

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

October 28, 2009 Phoebe Sparrow Wagner Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Added on Oct 31.

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

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

Art and artwork, depth perception, portraits, Temporal Lobe Epilepsy, Vision, Vision therapy

Vision Therapy, Art and Wonder

September 7, 2009 Phoebe Sparrow Wagner Leave a comment

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

____________________________

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

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

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

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

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

Art and artwork, Mad Pride, Psychiatry, Recovery, Schizophrenia

The Icarus Project and Mad Pride

August 19, 2009 Phoebe Sparrow Wagner 2 Comments

This is how Newsweek begins its article about the Icarus Project and Mad Pride:

“We don’t want to be normal,” Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn’t take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still.“ http://www.newsweek.com/id/195694

Readers will note two things immediately: It is not common for someone diagnosed with schizophrenia these days to be “delicate and thin” — despite articles claiming to prove a supposed link between schizophrenia the illness and obesity, most of us would say that weight gain went right along with taking meds from the get go. And that most of us were originally either of normal weight or even thin compared to “normals.” the other striking thing, I think, is Will Hall’s level of energy. Most of those with schizophrenia, at least those on meds that I know, have a much lower level than normal of energy and motivation, which again is attributed to the illness itself. Now of course negative symptoms might be an effect of the illness, yes. But I also know that at least when I took the older drugs, like thorazine and mellaril, they added tremendously to any inner listlessness I might have felt. Indeed, what else is the infamous Thorazine shuffle but a drug side effect that practically screams medication-induced psychomotor retardation?

In any event, it may be that some of my readers with schizophrenia, and many of the mothers (and in my experience when caregivers visit this site it is often mothers who do though sometimes fathers do as well) of those with schizophrenia, may well disapprove of my posting this link. But I feel it deserves a viewing. Too many of us suffer the effects of medication without benefiting from its advantages not to offer another form of hope. As long as someone is not a danger to him or herself or others, why should they not be offered the experience of Mad Pride, should they prefer it? In these later stages of my own “condition” I too long to be off meds and to experience my experience, to do art unencumbered by the effect of meds that fatigue me if nothing else. But if I feel enabled now, and emboldened by some inner force to do art, I just might be liberated to unknown heights once off the meds, and if I can control the dangers I used to put myself in vis a vis cigarettes and such, why should i not be permitted such an experiment. Alas, no one here would ever allow it. I would have to endure such remonstrations and scolding and worse from relatives and others it is simply not worth it, or else I simply could not bear the bitterness of fighting with them…SO I am stuck, stuck on these deadening and dangerous medications until such a time as I feel free enough to move away, leave town and move elsewhere. Until such a time as universal health care enables me the freedom to leave the benefits Connecticut so generously provides me as a Medicaid/Medicare patient, and live elsewhere, I am simply forced to live in my same old tiny apartment and change nothing.

But some of you might be wanting to make that change and be more capable of it, be more able to maintain 1) stability and 2) a family support network, rather than a state of constant resentful watchfulness and remonstrations of such bitterness that make it not worth the effort. I know my friends would definitely support me, but I need my family to as well, or feel I do…I am not yet ready to say I can do without it at any rate…And so I remain in thrall to their demands on me, despite the fact that for many years I had no ties to them at all, and neither help nor obligations bound us. If it is good now between us, and I love that part of it, it also means that I feel that I must live up to expectations I could disregard before…and that is so hard, and often such a burden.

Nevertheless, I love them, insofar as I am capable of the emotion of love (see posts below for an explanation of that caveat). And if I am not, then I feel for them as mu9ch as I am capable of feeling for anyone…which is all they can ask.

But I have diverged from my initial subject matter which was Mad Pride. Tomorrow I give a talk and a poetry reading at the House where I live of 250 residents, though only a handful are expected to attend. IN the talk I finish by answering the question, do I link mental illness and creativity, and my answer is, Maybe, but even so, in most cases the best work, mine at any rate, is done “best when I am better.” I mean by this that deep in psychosis I cannot write anything decent, if I write at all nor do any decent art, because I am no longer motivated nor able to concentrate well enough to do so. Perhaps in a manic state I have been able to, but those have sadly (yes!) been too few. Otherwise my more extreme moods have been called a mixed state or major depression. In any of those moods, and certainly when extremely or even moderately paranoid, I do little work at all. And when hearing “bad voices” ditto, since that is when I am most likely to be concentrating on acts of self-harm and least on self-nurturing activities such as art. So you see why I say what I do, that only when I am at least getting better do I do my best work?

Moreover, I believe this is true of most people. It seems to me that even in the case of the Mad Pride artwork at the Newsweek site, those artists were not in fact psychotic at the time they did their art, Oh, perhaps they were depressed, but clearly not catatonicly depressed, by definition. And I cannot believe that they were disorganized even if their diagnosis was schizophrenia, because however weird the artwork, there was recognizable order and ordering in each and every one…

Welp, I am getting fatigued just writing this, so I will leave you with that short disquisition and the link to The Icarus Project. I am not endorsing or not- endorsing it, only expressing my interest and indicating my plan to continue to read up and find out more. Somewhat not surprisingly, there is an active ? branch in Northampton, MA, which is the town I have wanted to move to for a number of years, but have not yet had the nerve. Nor has there been the financial or medical feasibility. Now there might be, but it is still not possible. Oh, I wish I could move, but there is Joe to consider, and I would not leave him now.

That said, here is the Icarus Project Link. Enjoy? Comments will all be read and appreciated. I will respond if I can.

http://theicarusproject.net/

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Tag Archives: Recovery

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

“Lady Quixote” on Recovery from Hearing Voices

Doing Art to Save My Sanity

Miracles: Four Life Changing Events

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)

WILDFLOWERS ON THE ROAD TO DAMASCUS

Useless Psychiatric Mediation and a Poem

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

TO MY PROTECTORS

Recovery: A New Definition

New Working Definition of ‘Recovery’ from Mental Disorders and Substance Use Disorders

Trauma: Exposure Therapy or Salt on Wound?

Photos from “Reflections on a Psychiatric Seclusion Room”

ART SHOW IN HARTFORD

Open Studio Hartford is a Hartford regional event that celebrates the arts!

Artwork from Hospital

Imaginary Interior with Mirror and Red Chair…plus

Natchaug Hospital Stay and Comfort Room

The Painted Woman, Poem for 350.org, plus yada yada

FRIDAY NIGHT VIGIL

Symptoms, Zyprexa and Recovery Again

Collage of Christabel: Middlesex Occupational Therapist (finished)

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

Hospital, Hypomania and How Hope Eventually Returned…

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

Vision Therapy, Art and Wonder

The Icarus Project and Mad Pride

"While I breathe, I hope"

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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)

WILDFLOWERS ON THE ROAD TO DAMASCUS

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

TO MY PROTECTORS

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New Working Definition of ‘Recovery’ from Mental Disorders and Substance Use Disorders

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Open Studio Hartford is a Hartford regional event that celebrates the arts!

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FRIDAY NIGHT VIGIL

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"While I breathe, I hope"