Category Archives: Writing

Book of the Year Finalist

Hi All,

Apparently We Mad Climb Shaky Ladders (CavanKerry Press, Feb 2009) my book of poems about living with schizophrenia, has been nominated a finalist for ForeWord Magazine’s 2009 Book of the Year (in the Poetry category). I dunno what this means, and I doubt highly that it will win, but I am very happy and grateful to have been made a finalist at all. The results will be announced on May 25th  at the BookExpo American, wherever and whatever that is. I’ll keep you posted, or perhaps you can keep me posted…

Here’s the cover of the book just in case you don’t know what it looks like:

Stereopsis or 3-D Vision: The Pure Experience


SPACE, MATTER, LOVE

The world is charged with the grandeur of God.”  Gerard Manley Hopkins

December, first snow, 2009

Who hasn’t said, “You don’t know what you are missing,” when speaking of something she believes another ought to experience– sky-diving, say, or a certain exotic brand of coffee or the pleasures of her favorite restaurant. Because I was unaware for years that I lacked depth perception this was literally true: I did not know what I was missing because I no longer remembered what I had lost. I had in fact no idea there was anything to lose. But with prisms in my glasses, and after months of vision therapy and eye exercises, experiencing 3-D, or stereopsis as it is properly called, was as spectacular as it was elusive of description. Nevertheless, I am nothing if not a writer and so I do my best to put it into words and show you.

Early this morning I went to move my car from the snowed-in parking area and found myself at 5 a.m. alone outside. The street lamps next to the building were on. I could clearly see snow falling against the dark sky as I headed towards the lot. Suddenly there was a nearly audible click in my brain and everything changed. I felt as if I were in a snow globe, inside the snow, separate flakes plummeting around me, each on a different plane, riding a separate moving point in space as it fell.

I looked at a bush with its bare twigs, the ends of which were mounded with snow.  The contrasts in it were heightened, with the boundary between the blackness of twigs and the white snow crisper than I’d ever seen it. Everything was silent. Along with the exquisite clarity and precision of detail, a rush of affection for the universe knocked me breathless.  I stood there smiling. Had I ever seen anything more beautiful than what space had done to this bush with its twigs of snow?  This was not the negative emptiness of which some art critics spoke so passionately, but something positive like an embrace. It is difficult to convey what I mean by this: when we speak of space we usually mean the empty gap between masses, between physical entities or things that matter –after all, isn’t that why we call them matter? But in this instance, I meant space as sculptor of reality, and as artist and sculpture both. Space was the loveliest thing I had ever perceived. It had mass and, by virtue of its own volume, gave substance to the objects surrounding it.

But I could not yet put all this into words. At the time I just smiled, and gazed at the bush and twigs and sidewalk and streetlamp in a kind of dazed wonder.

I went back inside to write at my computer. Just as I sat down and put my hands out — out! how lovely that my hands went out into space, I thought –  the keys on the keyboard drew my eyes to them. My heart ached at the sight of the fraction of an inch between each key and the computer. The space that was their height above the computer took on a numinous quality that would not let me withdraw my gaze. My typing fingers too. Not only that, but the sheer fact that they were above the keys, the space between fingers and keyboard, then the way embodied space gave form and substance to the small squares –indented just slightly to fit the pad of a fingertip – all this made me laugh with tenderness and delight. I was full of bubbles. Why, the entire world was friendly!

I circled my rooms, hypnotized by space, by how space made everything important. How profoundly dishtowels spoke to me, saying, Towel, Towel. The threads stood up, cupped and defined by emptiness, each one loved into being by the artistry of space. Terrycloth folds were utterly different from a fold in paper and yet that folded paper, bent on an angle around a “shapely void,” struck me as infinitely loving. The sculpted space on each side of the fold was so exquisite it brought tears to my eyes. On I went. Doorknobs yearned, reaching out from doors into space. Bookshelves provided a welcoming recess, intimate and implicit with corners, as if saying, Come in, we will protect you. What a delicious concavity each spoon was, a miracle!  My circuit of the room would have been ridiculous, had not everything been so lovely, and so thoroughly devastating.

Mere words hardly serve to describe how I perceived. I felt seized by joy, by delight and yes, by an overwhelming love for all that my eyes alighted on – snow-covered bush, computer keyboard, a friend’s hand extended  in comfort. I know that most people understand the first and last, but few are mesmerized by spoon or towel or indentation of computer key. This troubles me. It is easy to love nature or one’s friends. But I suspect overpowering love for every literal thing is not prosaic. Space sculpts the world, and I was abruptly and unexpectedly given the gift to love all of it. Surely such a gift is available to everyone, yet it seems inaccessible, except largely to those crazed by either drugs or illness. Or to others who have regained, even temporarily, long-lost depth perception. Perhaps because so many have always seen space, they have lost the ability to perceive how beautiful it is and to feel how it embodies.

Later these visions, these perceptions faded along with my new but brief ability to perceive depth at all. But I remember near the end looking into a certain receptacle and being bowled over to see that it had a rounded interior. The sheer “interiority” of it, as well as the fact that it implied roundedness so matter-of-factly that I didn’t have to feel it to know it: why hadn’t I understood before? It struck me as sad and yet the most transcendent discovery of my life. If the world was charged with the grandeur of anything, then that something was the positive, optimistic Shaper of things, their Creator, which we instead call, as if it were nothing, “empty space.”

This is a tragedy and not merely for the individual of normal vision, but for humanity, most of whom will never experience a love for spoons and doorknobs or computer keys or hands above the paper or, by extension, love of every object and every nose and every creature in this world, of every thing and all matter, which is shaped by the Space that loves us. This may be the reason we have done what we have done to the environment, the precious matter in the Creative Space around us.

Because we could not see and therefore could not feel how space is the Creator and loves the matter of the world, we have destroyed it, and ourselves in the process. How could we have done otherwise? We did not know.  We did not see. And we could not feel the truth: that Space is Love and loves the world and makes us, and all matter, beautiful.

Wonderful Poem at the Merton Institute

Check out the  http://mertoninstitute.org for the source of this, but in the meantime, I think it is not illegal to reprint it here, a marvelous poem, chosen by our friend and hero, Billy Collins, for the 2008 Merton Prize for the Poetry of the Sacred. As I wrote in a letter to a friend about it: I have this secret fondness for formal poems that hide their form beneath enjambments and nonchalance and (perhaps this may sound weird) humility, as I sense this poem does…I really liked it, found it sort of Frost-like, without its insisting on the likeness. Could not find out anything more about the poet, nor any more of his works, except the single sentence that he has indeed published before…Wonder where and what.

The Orb Web
by David Culwell of Columbus, Ohio

One night I stood inside
And, through the fan-shaped window in
The front door, watched a spider spin
A web to snare, in its tried

Way, some of the mesmerized
Moths fluttering in the porch light’s glow
Like bits of paper people throw
At parties or pint-sized

Satellites. The wheel
Of a web hung beneath the right
Corner of the frame, not quite
But nearly setting a seal

Against my going out
Or someone’s coming in. Indeed
A friend was coming soon to read
My hard-spun lines about

Beauty’s fading bloom.
I need to get the broom, I thought.
But I just stood there gazing, caught
By the eight-legged loom:

An inch or so, with gray-
Brown hairs and legs with bands of brown
and yellow, it hung upside down
Laying a sticky ray.

Like a second hand
It circled, moving inward; soon
the web, which seemed a gauzy moon,
Was done, with every strand

Laid necessarily.
The web itself was like designs
On Persian rugs; I read its lines
As living poetry.

A moth flew into it
At three. It fought, wings flickering,
To free itself, but couldn’t spring
Away from the gripping knit.

The spider scuttled there
And nimbly spun the moth in silk
While another of its ilk
Flew into the snare.

The spider hardly knew,
Of course, that something like a gust
Would sweep away its work like dust
And leave no strand in view.

I looked at my watch: the time
Was near. I didn’t lift my gaze,
But walked away, trying to raise
The mettle for the crime.

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

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.

New Book Is Out: Poems on Schizophrenia

Yes, I finally hold it in my hands, We Mad Climb Shaky Ladders, published by CavanKerry Press. Below is the cover illustration (minus the Spiro, which is on the final version) and the press release:

We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner
We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner

NEWS from CavanKerry Press
6 Horizon Road No. 2901 • Fort Lee, New Jersey 07024 • phone/fax 201.670.9065 • cavankerry@optonline.net

FOR IMMEDIATE RELEASE

Contact: Florenz Eisman — 201.670.9065

WE MAD CLIMB SHAKY LADDERS

Poems

Pamela Spiro Wagner
With Introduction and Commentary by Mary B. O’Malley, MD, PhD

Foreword by Baron Wormser

For forty years – longer than her entire adult life – Pamela Spiro Wagner has been affected by paranoid schizophrenia, a plight she eloquently explored in her award-winning book, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, co-written with her twin sister, psychiatrist Carolyn S. Spiro, MD. Also an accomplished poet, Wagner has long utilized the language and emotion of poetry to express the individuality of her mental illness, capturing with vivid candor her singular inner world. In WE MAD CLIMB SHAKY LADDERS, the latest volume from LaurelBooks, CavanKerry’s Literature of Illness imprint, Wagner for the first time collects her poems, presented with commentary by her psychiatrist, Mary B. O’Malley, MD, PhD, that elucidates the clinical roots of the poet’s art.

WE MAD CLIMB SHAKY LADDERS “is much more than a testimony to a diagnosis or pathology or terminology,” writes Baron Wormser in his foreword. “The poems emanate from the place of the poet’s illness but they are resolutely poems—well-written, sensually alert, quick to turn and notice and startlingly honest. They dwell on both sides of the equation of life and art: testifying to the powerful and tenuous links between the two and demonstrating that art is capable of holding its own regardless of circumstances. Some of those circumstances have been shattering. The sheer tenacity that it can take to write poems makes itself felt here in ways that are both uncomfortable and reassuring.”

Wagner’s often harrowing struggle with life, as reflected in these poems, has been marked by psychological turmoil – periods of total debilitation, as well as intervals of recovery and hope. Her battle with paranoia hovers over the work, such as in “Poem in which Paranoia Strikes at the Grocery Store” where the simple act of shopping becomes a waking nightmare: “Who/gave you permission to enter? No one/wants you here. They are all watching….You are being followed./You are on your own.” Wagner captures the voices in her head with terrifying urgency. In “Offering,” Wagner’s very first poem, written in 1984, she writes of her compulsion to burn herself with cigarettes with a haunting remove:

The tip of the cigarette glows and grins
as I lower it to you,
Unlover,
alien body.

At Dr. O’Malley’s urging, Wagner has also included three poems she wrote during the heights of psychosis, and these are filled with scrambled ideas and garish imagery that are shocking in their raw, unguarded unveiling of the poet’s troubled mind.

Divided into five sections, Wagner’s book covers childhood and the earliest indications of illness, the years of illness, recovery, coping, and new beginnings. As with most poetry grounded in autobiography, there are important familial relationships that seep into the poems – father, mother, sister, friends. Here, these relationships are filtered through the poet’s psychosis, colored by hallucinations and delusions, yet grounded in the emotional truths that any complicated relationship engenders. In her most widely known poem, “The Prayers of the Mathematician,” which won First Place in the BBC World Service international poetry competition judged by Wole Soyinke, Wagner moves beyond the personal with an eloquent poem about John Nash, the schizophrenic Nobel Prize winner who was later immortalized in the movie, A Beautiful Mind.

“These poems are the work of a first-rate writer” says surgeon and best-selling writer Richard Selzer of WE MAD CLIMB SHAKY LADDERS, “one who has sounded the well of her own suffering to retrieve the wherewithal to transform pain into the most powerful and moving literature.”

~~~

About Pamela Spiro Wagner

Pam coral and green
Photo of the author in May, 2009

A prize-winning writer and poet who suffers from schizophrenia, Pamela Spiro Wagner attended Brown University and went to medical school for one and a half years before being hospitalized for psychiatric care. She won First Place in the international BBC World Service Poetry Competition in 2002, and co-authored, with her twin sister, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, which won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. Currently she writes at http://WAGblog.wordpress.com. She has lived in the Hartford, Connecticut area for 33 years.

CavanKerry Press would appreciate two tearsheets
of any review or feature you publish about this book.

WE MAD CLIMB SHAKY LADDERS by Pamela Spiro Wagner
Publication Date: 2009
Price: $16.00; ISBN: 978-1-933880-10-5
Distributed by: University Press of New England (UPNE), 1-800-421-1561 or 603-448-1533, Ext. 255

Author is available for speaking, readings, and workshops.
Contact: pamwagg@cox.net or pamwagg@yahoo.com
Tel: 860-257-9188

Two Poems: The Middle of Nowhere

Although this poem, under  a slightly shortened title, will be in my soon to be released book, WE MAD CLIMB SHAKY LADDERS, I showed the rewritten version to my writers group tonight . It is basically a true story, about the friend whose recitation of a Gerard Manley Hopkins poem instantaneously converted me from a poetry skeptic to a poetry lover…but read on and you will see what happened.

 

The second poem was sparked by my recent hospital stay but not based on it, rather it is based on the misinformation purveyed by movies such as the ones mentioned in the beginning of the poem, and also in the books from which the movies were made.


YOU WERE A POET ONCE (NOW YOU ARE

LOST IN THE MIDDLE OF NOWHERE…)

 

You were a poet once. You touched my soul

with the gift of poems, teaching me to read and write–

oh, inevitably to write them, for writing made me whole

and I could never not write. I had no special goal,

only to “pour out a poem” and work it right.

 

That took me years. I was such a fool —

dreamy cups of poems, quote unquote, only wasted good ink…

But I was speaking of you. You gave me the tools

to teach myself; you should have returned to school.

You found vodka: you could not, after one drink,

 

stop. And though it seemed deliberate, a choice,

I suppose you couldn’t help it. On conversion day

you recited Hopkins’ “Spring and Fall,” your voice

for once not blurred by Popov. (Still, I didn’t dare rejoice.).

You were so sure, so caught up in what you had to say.

 

It changed me utterly. Few experiences work such magic.

Why you quit poetry for drink I’ll never understand.

Life made you querulously unhappy, so there’s a logic

in your refusal to live. But I’ll never not think it tragic

how your gift to me soured in your own hands.

 

 

 

REALITY CHECK

 

First, you have an address, a 9-digit zip code

and two free patient telephones, so you’re not lost

in the middle of nowhere, this is not the movies.

Not Cuckoo’s Nest at any rate, nor the I-Never-

Promised-You-a-Rose-Garden rose garden.

And that Girl, Interrupted? No, it is definitely not

her giant sleepover with hair rollers, gossip

and steaming hot chocolate. For one thing,

hospital tap water isn’t hot enough for cocoa

and unless your roommate, the anorexic

with fruity breath and ironed tee shirts

becomes your best pal, that’s it for the party,

no one else gets in your room. Even in a single,

the checker disturbs you every 15 minutes.

Now, I know that keys play a big role in film:

someone always swipes a set for the night

to go AWOL or wreak havoc. In reality,

“insurance cured,” most want to stay longer

than leave shorter. Going AWOL is more

the impulsive leap through briefly opened doors

than planned absconding at midnight

with a stolen keycard everyone is watching for.

Too bad paranoids still suffer, unable to trust

the good of best intentions. As for having

enough free time for the ward sociopath

to “wrap the catatonics in toilet tissue,”

there are too many groups and too many aides

with a job to do and you are it, so get moving.

Besides, catatonics are not allowed to stay

catatonic, what with medication and better care, 

so very quickly slowly they move too.

 

Schizophrenia: Recovery and the Reality Test

There have been many stages to my recovery since my first hospitalization at age 18 and really since age 31 when I was formally diagnosed with schizophrenia. While there were countless hospital stays, sometimes 6 in a year, or  2 three-month stays practically back to back, I managed to climb back up to a place where I could go back to the world and function well enough to write poetry, all that I asked of life. With better drugs being available and also better treatment of the mentally ill and improving attitudes towards us, I experienced what you might call a breakthrough each decade. It never quite made me whole or happy, but each mini-recovery lifted me a little higher out of the muck of depression, despair and anhedonia (loss of the ability to feel pleasure)– for a time at least. And each breakthrough gave me lasting tools to deal just a bit better with the next onslaught. I can’t say I learned very well or very quickly, and insight gained with great difficulty abandoned me time and again at the very moments I most needed it. But I became able to write about these episodes after the fact and to learn from them later. At the very least, I felt I could teach others from what I was able to put into the written word.

 

One of the hardest to learn but most useful tool in my recovery tool box even to this day is what I call: The Reality Test.  It sounds so very simple, consisting of the need to challenge a delusion or hallucination by asking the people involved a question pertaining to the matter, such as, Did you say such and such? Or Did xyz actually happen?or Did you hear what I heard? The key thing is that after you ask the question you must listen to the answer and trust that the person’s answer is the truth. Often I would do everything except for the last part, where I balked, and simply accused allof lying to me unless the other person corroborated my paranoid assumptions.

 

 

Until I learned it, and could do it fully, including the trust the truth part, I had no idea that I was living in something other than consensual reality. Even though people told me again and again that I was paranoid and delusional, I figured they were just using such words against me, to hurt me, insult me because they did not like me, because they had hated me from the minute we met. But once one especially frightening delusion dissolved in the light of reality, it became clear to me how much time I had been spending in a fictional world and how often I needed to use that reality test, which is to say, all the time.

 

 

Lack of insight. That was the fundamental difficulty. I did not know that I had  a problem. The reality test gave me insight, but it often took me a month long hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it.  This is as true for me in 2009 as it was in 1984. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I have only found insight in the accident of using it. Perhaps it is different for each individual. If you or your loved one cannot understand that there is a problem, do not force it, it will not do any good: you cannot see colors if  your eyes have no cones. What you can do is find a way to have them agree to take medication anyway — as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I once decided to force myself to take them and started doing so in the hospital where I had been refusing them. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I did not refuse medication even once.

 

          Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree that where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances sometimes this can be necessary. I understand that some people with schizophrenia will be horrified by this suggestion, but I, have been around, done things that I wish I had not done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off medications — whether Thorazine, Prolixin, Clozaril or, worst and best of all, Zyprexa, I would never stick to any proposed regimen –about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. 

 

Now I am on 17mg of Abilify twice a day plus a full dose of Geodon. Two antipsychotics. Two anti convulsants. An antidepressant. A stimulant for narcolepsy. A beta blocker for side effects, specificially Geodon induced akathisia, and two antibiotics for Lyme disease. But I take them, supervised by a morning and evening visiting nurse and wow, what a transformation. They are not like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.

 

Now, though, now I write like wild fire. I write and write — pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like an electro-chemical river from my brain down through my fingers and pour out into the world!

 

So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It is what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they would but surrender a tiny bit of what? freedom to be crazy? to suffer? and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been taken lightly, to work to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.

 

There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to “get” rather than forget the reality test? 

Prison Abuse: A letter etc.

Edited from a letter to a friend: 


I sent the following message to the White House website — the Office of Public Liaison. It is the beginning of a snail mail campaign (insofar as I am able), geared directly at President Obama asking for a prison and “juvy” reform agenda. So far as I can tell, he has nothing  of the sort at this point and we need one.

 

This is the very least I can do as I have decided that while I write this blog and books on behalf of my own issues around schizophrenia and mental illness, my political writings and action will be on behalf of a prisoner I am acquainted with who is sentenced to “life without hope of parole.” (I ask you is there a more fiendish mode of inducing despair, desolation and desperation in a soul than such a sentence?)



But my question  submitted on the form available was as follows: “Is there any Obama agenda for humanizing juvenile detention centers and for prison reform?  Abu Ghraib, Guantanamo and other foreign-soil prison abuses  did not come out of nowhere. Abuse and yes, torture of prisoners in “juvy” and US prisons are practices both brutal and common that serve no purpose except to create more violent convicts. Most will one day be released – to no one’s benefit, least of all  society’s. NO ONE CARES about them. They have been forgotten, lost, abandoned. PLEASE help.”



 

I was limited to 500 words so this had to be very carefully crafted and I wanted to get in some of the most important points. I dunno now about the comment about Abu Ghraib, but it seemed to me to be the important name to cite — an accurate reference for all that, according to my source– to draw attention then to the equation with US maximum/moderate  security prisons.

 

Anyhow, I don’t expect much of an answer (though the website implies the promise of something along those lines) but it was mostly to introduce the subject, into which I plan to go in greater detail in later letters.  


 


Towards the same ends, I am reading Christian Parenti’s 1999 book on US prisons and the “correctional system” in general, Lockdown America. I have had the book for years but have never been able to read it, though I wanted to. Now, suddenly, due to interest in this prisoner’s plight, I am slowly plowing through it. I admit it is difficult to get myself to sit down and read, but I really want to and so I persist.

 

My eyes, I think, continue to rebel. I have found that recently I have had to continually wipe my glasses clean in order to see better, or felt that I had to, without real relief. I am not sure what is going on, though. I believe I can still see 3-D okay. I just feel as if there is a scrim of something, a veil between me and the world…But it is more that than anything, and my usual narcoleptic sleepiness that prevents me from reading. Certainly not lack of interest and dedication. Still it remains very frustrating to me that getting through an entire book takes such a long time while writing is so easy (This is due in large part to my antipsychotic medication, Abilify, which I strongly believe facilitates putting words on paper, if insuring nothing at all about the quality of their ordering).

 

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Anyhow, truth to tell? The times are grave…I am attempting to work on a poem about Obama as Messiah and the concomitant end of the world. At the same time, I want to move to higher ground as I wrote in the earlier post, as soon as I get a spot in some other complex out of the Valley. That, however, could take years, I am told, as I am low on the waiting list, being disabled not a senior (I’m 56 and need to be 62 to be so classified, though the cut-off may be 65 by now)…

 

I do not know if the six years till then will be soon enough, and too, why continue to live if there will be social chaos and a catastrophic flood, famine and widespread panic, the predictable breakdown in all civil order…? I’d rather die, and by my own hand than survive to have to worry about being murdered by –

Argh, you don’t need to hear this, I think. But people are already  filling my head if not the halls with screaming and gnashing of teeth. I fear I may need to barricade the door… 

On Writing and Memory

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

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

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

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

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

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

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

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