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Love Is Nowhere but Here
I cannot love but continently
west through all the space
that joins the hot stove
of sun we float inside
like leaves relieved of summer green.
wanted the caress of real
hands, tongue, lips
fingering her hair and whispering
I am not woman
of anyone�s past passion,
willingly taken or given back
soul changed, enlarged.
Fear is the pride in my long bones.
My flesh does not ache.
Only my eyes yearn
for the shadow of his deepening words.
�What is particularly curious about quantum theory is that there can be actual physical effects arising from... counterfactuals -- that is, things that might have happened although they did not..."
I didn�t marry the right man
For twenty years and now, see
How fat he has grown
Against the sickle of my body
He knocks at my bones
For the rest of my life
Each year a new death
Hard swallows the knot of pearls
Choking my throat
God�s long shadow
Dogs my heels
No plum-eyed girls
In the year of the dam
Danger, dance with opportunity �
Nothing is certain
On the hill above my old house
The dead gather weeds ---
In half an hour
We remember everything,
Boast empty panes
Behind the swinging door
A four-cornered wind
Flings stone at sky
Emily Dickinson wrote this poem in 1858, the start of her most productive years. I quote it in apology to a certain friend I may have hurt deeply. I hope she recognizes that this is for her and that this apology will suffice to bring her back. This is for you, my pea pod pal:
One Sister have I in our house,
And one, a hedge away.
There's only one recorded,
But both belong to me
One came the road that I came --
And wore my last year's gown --
The other, as a bird her nest,
Builded our hearts among.
She did not sing as we did --
It was a different tune --
Herself to her a music
As Bumble bee of June.
Today is far from Childhood --
But up and down the hills
I held her hand the tighter --
Which shortened all the miles --
And still her hum
The years among,
Deceives the Butterfly;
Still in her Eye
the Violets lie
Mouldered this many May.
I spilt the dew --
But took the morn --
I chose this single star
From out the wide night's numbers --
Perky* -- forevermore!
* in the orignal this is "Sue" but Perky should recognize herself in these lines and hopefully will forgive me a night of impulse, wrath, and utter insanity (all of the most inexcusable sort).
With apologies to J and L, from a letter to whom I have taken this, edited of course-- a description of my personal experience with catatonia.
To me, two things happen when I become catatonic. One is that I enter a state of profound indifference so extreme that I, ordinarily an extremely modest person preferring never be seen naked, refusing even to have the usual female medical exams/tests, can be stripped of all clothing and have all sorts of catheters inserted and even be toileted by strangers without the slightest reaction, either internally felt or externally apparent. I no longer care what happens to �that body� everyone is fussing over, and feel an almost Buddhist-like detachment from it, from all the concern and bother going on about me.
The other thing is that along with this indifference comes the more obvious slowing down, even to the point of immobility. While I may seem immobile and non-responsive to those trying to elicit a reaction, in fact my experience is one of reacting quite appropriately, just in glacial time, which to me feels perfectly normal. In fact, other people seem to be moving way too fast and only the clock tells me that I am the slow one rather than the reverse.
My indifference allows me to perceive all of this without distress, merely a detached curiosity, like a scientist observing natural phenomena, while my �psychomotor retardation� doesn�t feel particularly slow except in comparison to others. It does prevent me from communicating quickly enough to be heard though, and no one notices that I am answering a question, am performing an action, because they are in such a hurry!
Meanwhile, whether my actions truly make sense or not, that is, whether they are motivated by psychotic thoughts, they are purposeful. I am, for example, reaching out to wipe my nose, even when my arm seems "stuck" or "posturing" in mid-air apparently nowhere near my nose. It just hasn't gotten there yet, and it's extremely frustrating when others, trying to be helpful, replace my arm "more comfortably" down on the bed, because then I have to start all over again. Though they can't see it or hear it, I *am* moving, I *am* answering, only in a time frame they do not perceive or won�t wait for.
Does this sound familiar to any of you? Supposedly it's a rare state, yet I've heard many people with sz say they've been catatonic. A recent New Yorker article by neurologist Oliver Sacks fascinated me because I never knew that coming out of it abruptly, then launching into the opposite state was fairly typical. A friend has often warned hospital personnel that when I come to, I will �go wild.� But I thought that was just me, a peculiarity unknown in other cases.
Instead, Sacks talks about this kind of �bipolar� switch from catatonia to frenzy so precisely it amazes me...I �flip� completely, and without warning. Nurses caring for me sometimes believed I had to somehow have been faking the catatonic state, (though how that could be done I don�t know) because they couldn�t understand how I could go from immobility to agitation without any switching of gears. Understandably they wanted something � anything � indicating that the changeover was coming. Instead, I woke up, so to speak, and immediately went bananas.
All this remains a curiosity to me, but even now I cannot feel distress remembering it, only the same detachment from my body, as well as a pervasive perplexedness that any of it mattered. The only time I felt upset was after being given IV Ativan, which according to the doctor often relieves catatonia, though no one is sure why. Then I �knew� something was supposed to happen, and suddenly, before I could physically move, I finally cared. I wanted the bolt of electricity to hit and arouse me, whereas before then I couldn�t have cared less. It suddenly mattered that I could not, or at least did not, move properly...and it felt for the first time like the �eternity� it was, for me to begin to react.
It wasn�t that I wanted to please the doc, though I admit I felt like he was showing off in front of his students and residents,by coming back the way one might in a TV movie, but it was certainly what I expected. (By the way, for those of you who don't know this, in such a state, the brain, the mind is nonetheless aware of everything, one just doesn�t react or respond to the world. But one hears and sees just fine, a warning to those who talk in front of people in catatonia as if they were zombies.) Soon after he injected the Ativan into my IV, I *felt* the slowness of my actions and understood how awful it must have seemed that I lay there completely motionless for so long.
Finally, the drug began to take effect on my body, several minutes after my brain felt it; that is, I wanted to move before I actually could. Anyhow eventually I could feel my muscles returning to me, could feel the impulses at the neuromuscular junction connecting normally, and soon I found myself able to blink on command, or give a feeble squeeze of the doctor's fingers. Then slowly, over a couple of days, I became able to talk and walk on my own again.
Mind you, all this is what happens under the effect of IV Ativan; if however I �wake� on my own, then it is to frenzy with no agonizing or gradual coming to. Even with the help of Ativan by IV, I usually flip into a super-reactive state, but at least then there is some warning before it happens, however slight.
As I said, all this still fails to disturb me. I�ve often wondered how other people felt when catatonic, or whether they too have no emotional recall of the state, not caring about it now, just as perhaps they did not when in the midst. Paranoia and such often seem an extreme exaggeration of feelings everyone can relate to, but catatonia seems to me to be a state with which there is no ordinary analogy.
Anyhow, that's -- briefly -- my story. Anyone with comments about their own experience is welcome to add them here.
I don't think I've kept you all up-to-date with the most recent developments in my family, especially with my father and me, from whom, as you may know, I was estranged (his choice) for more than 30 years.
I think the end, or better, the beginning came after Kathy Megan's article in the Hartford Courant (findable on this website, if you click under my name in the list of blogs and follow links to "Twin Realities...") when he found that she did not blacken his name as he'd expected, but rather let him tell his side of the story. That was one. But another beginning was his taking a friend's son, who has SZ, under his wing, and learning about it first-hand. I think both this young man, who himself does not get along well with his own father, and *my* father, benefited from this rather odd relationship: Yale professor and writer and lecturer and an unemployed schizophrenic. In any event, it helped him learn a little about what might be going on in my life and why I can't work or function exactly as do so many people he knows. As he always expected me to, in short.
So he was coming around, as they say, but hadn't yet figured out how to break through the last remaining wall of silence, that is until I was hospitalized at St Raphael's in New Haven this winter, a very short distance from where he lives. One day, I was sitting in the single room they'd given me for being too disruptive for a roommate (which was helpful to me, too) when in walks, of all people, my father, who sits down and starts talking to me as if nothing had even been between us all these years.
I was astounded, and I admit that afterwards I misinterpreted some of his comments in a negative way that I was told he did not intend (I was still ill at the time, which may explain this). But the important thing is that he kept coming, once visiting 3 times in one week. After that first visit, I came to enjoy seeing him, and while part of me may have been angry with him, the much greater part was absolutely thrilled to have him back in my life. And any anger I felt very quickly dissipated under the sheer volume of his repeat calls.
This was a miracle I never anticipated, though I'd tried to reconcile often before this; I'd sent him letters, and subscriptions to magazines I thought he'd enjoy, and invitations to come up to Hartford for lunch etc etc. But nothing broke through the wall. Until that day he appeared, on his own, at St Raphael's hospital, taking what I consider the biggest risk of all, since he could have come accompanied by my mother or someone else, to alleviate the tension and his fears. But no, he had the courage to come to see his daughter, no matter what shape she was in, alone, and I admire him for that.
Ever since then, he has come to Wethersfield to visit me, making it up here for breakfast, several times, once every week or two in fact. He doesn't stay long, maybe an hour or an hour and a half, but that is partly for my sake since he knows I get exhausted easily and tend to overdo things.
What I realized from this was that 1) I love my father very much, and always have, but also that 2) he loves me, and always has, despite the anger and rancor and resentment he harbored for so long. I also think, as a plus, that he admires me -- though precisely why I cannot say, given that I've precious little to point to by way of accomplishments.
So that's my miracle, and I hope all who have been cut off from their families by this terrible illness will take hope in it, and that those who have built the walls, for any reason -- anger, disappointment, misunderstanding -- will see this as an object lesson in how to take them down and what it would be worth to all concerned if they did.
Thanks you all for caring and listening.
Heisenberg's uncertainty principle states that we cannot know a particle's position and momentum at the same time because to measure one is to change the other; in shining a light or electron beam on something to observe it, the observer thereby changes it. This poem is largely a meditation on that idea as well as the nature of illusion and how much we rely on it. The last line asks WHERE were you (God, destiny, a friend, a lover?) when the principle states essentially that we can't know where, and know who is there at the same time...So WHERE is used against YOU to illustrate that impossibility, even though it's a question we all ask all the time...
The Principles of Being and Non-Being are One and the Same
The great Heisenberg of small tenuous certainty
that what we know we don�t of time and place, what
we, waves, wrens or worms, the sleepy sucking currents
of deep ocean are is distorted by the social lies of light
that plays with everything like a child�s puppet
theatre making mock of all
that is ephemeral or enfeebled.
Yet what reflects in each thing of our longing
that we might see its face in day, midnight�s
candled moon and sparking stars
change into hidden language, like the deaf�s
manual music without melody, the voice of the silent body,
change it utterly without our knowing, how what *is* at night
*Is not*, nor even a shadow of what is under light.
Where was Heisenberg? Who or what was he, caught
within this same improbable masque,
the circus of the real where fire-eaters consume flame
more honestly than we our fries, our fish filets
under the gilded doubled arc.
Each unknown enthralled non-thing of our troubling
existence is silenced by the humble-most questions
of all: size and speed, place and journey,
face and the faces turned away--
Where were you?
Why were you not here when we needed you?
This poem is a personal one, based on several idiosyncratic details about my current life. The German is translated roughly as You are a Pigdog, which is a terrible insult, essentially words I hear or say to myself when I'm in a self-hating mood. The "dangle of pots and knives" and "beams rigged" refers to a booby-trap at my door, made with two heavy beams to which are attached a device made of a pot and several heavy metal knives, meant to clang and clatter if anyone tries to get into my apartment without permission. That's the fear part, the loneliness part is last, when despite the people passing in the halls to bring their garbage to othe chute on my 12th floor, no one stops to visit...And the last lines are indicative of this in their open but sadly unanswered invitation to ANYONE to come in. Title started as a play on words, but may be changed as it is too obcscure. Hope somebody likes it!
German of the Headboard
Woke with a migraine,
throat in my throat, thinking
in German, self-hating, my only:
Du bist ein Schweinhund!
The lubdub of pain, too much light-giving
life unwanted again and again.
Morning slashes its name across my eyes.
A door opens down the hall, the rumble
of footsteps to the chute where the garbage falls
twelve stories to earth.
No one stops.
Dangle of pots and knives goes off,
beams rigged at my door against strange enterings,
the gunshot of trespass.
I startle, heart-pound lacerating darkness,
starburst, shards, coruscations:
Is someone there?!
Silence inserts its scarring blade.
No one, no one, is listening anywhere
my meager thoughts left standing, charred knobs
of trees, stubby teeth along a past wall
Who�s there? My door is open.
Will you not come in?
With apologies to L and J from a letter to whom I "stole" these comments.
I hope the poem below is self-explanatory but a few words about one reference: endosulfan is a pesticide, heavily regulated in the US, which is sprayed on India's Kerala province where most of the world's cashews are grown. They literally fatten on the stuff being thereby free of so-called pests, though these may in fact be beneficial. In any event, endosulfan is known to cause birth defects as well as numerous health problems, one of which is "issueless women" in an area of the world where a woman without children is considered close to useless. I dunno where I read about this -- some reasonably left-wing publication, I assume -- maybe the Atlantic, or the Nation or the New Yorker or Harpers or, YIKES, I can't remember!
I, too, dislike them...
with agendas for this or that,
laudable, yes, but needing no poem.
No poem can plead the matter of the moment
because every moment matters.
A poem in its being
a poem must stand against
lazy syllogisms of wealth and deprivation,
war�s noisy scramble
and the silence of peace.
The political poem preaches and fails
to surprise with the unfamiliar,
ordinary imagination transforming
the soul�s struggle to survive
into silk, into silver, a tapestry
to tell the story of the world to the living walls.
Yet, for polemic, poems� best and worst
bear hard witness to Kerala�s cashews
engorged on endosulfan,
issueless women, children with palsy,
arsenic in African wells,
warnings of solar dimming,
the dying of the coral, each cause
worth all I do not have, asking nothing
but protest. I stand up.
I write this poem.
ON THE USE OF RESTRAINTS
By Pamela Spiro Wagner
Imagine this scene: A patient on a psychiatric unit is screaming, bellowing threats, swearing at invisible persecutors, throwing things. Finally a hurled shoe hits a staff member. He becomes understandably upset and enraged. The �goon squad,� several burly men in scrubs or security officers� uniforms, is summoned to subdue the offender. They toss her onto a bed and strap her down with locked leather cuffs, pinioning wrists and ankles, only to leave her there, immobilized and subject to the whims of an angry and possibly vengeful staff.
This is often the scenario for patients. I should know, having been a victim of forced restraints too many times.
I say �victim� and yet I am not particularly opposed to their use, if a patient agrees to them and there is the understanding that they will be removed as soon as the patient has calmed down. I am adamantly opposed to the way they are applied so often instead: in anger or frustration or motivated not by concerns for the safety of the patient or others but because there are not enough hospital personnel assigned to a shift to attend to an agitated patient. In hospital units today, restraints are used when there is a lack of manpower, something which is more and more common, and are rarely meant to provide brief calming reassurance to the patient and others that she cannot harm anyone.
No one likes to be wrestled to the floor or pinned to a bed like a pithed frog, especially not when you�re a frightened, delusional schizophrenic. Worse, despite official claims to the contrary, you can be ignored by staff for hours after a crisis has passed. I was once restrained for three days because, I believe, the nursing staff wanted to have what it considered a troublemaker off its hands. I was never a troublemaker, just a terrified young woman who didn�t know that what she experienced couldn�t actually happen.
Had I been felt secure enough to request restraints before I got out of control, had hospitals policies encouraged their use as a short-term way to deal with serious agitation rather than as retribution, or worse, because they were too short-staffed to deal with the problem one-to-one, they might have been helpful. But familiarity with the process made it too scary, too dangerous and degrading in just about every hospital I�ve been in. Indeed, if restraints had been recommended before being implemented by force, I�d have screamed, �NO! I don�t need them!� That culture has to change. And it can. But not by downsizing staff or settling for less than fully trained nurses and aides due to cost-cutting efforts.
What also must change is the reflexive restraining of any patient, in hospital or nursing home, whom the nursing staff consider too much trouble or too time-consuming to deal with. Too often the simple lack of personnel assigned to a shift forces nursing homes and psychiatric units to resort to restraints when they are not necessary.
Although use of restraints has declined nationwide, a Hartford Courant investigation in 1999 found that 100s of people were dying while restrained in psychiatric hospitals all over the country, a despicable fact that has led Pennsylvania to ban all use of restraints in state hospitals. Federal figures from 2001 show that 12 percent of Connecticut�s nursing home residents have been physically restrained compared to 8 percent nationwide. This statistic speaks volumes: no one should ever be restrained for any length of time or in such a way that their lives are endangered. Too often, because hospital staff are grossly underpaid and overworked, restraints are used for convenience, not because a crisis genuinely calls for them. If a single person dies while restrained, it is prima facie evidence of abuse, either directly, by grotesquely unethical treatment of the patient, or indirectly, due to short staffing, which allows a situation to arise where death could result.
Yet, taken out of the context of punishment or convenience, sometimes forcible restraints can provide relief, when properly implemented for as brief a time as possible. To do so requires skill and compassion as well as a fully trained staff. The common practice of dealing with demented residents in nursing homes by tying them into wheelchairs and parking them along the walls for many hours, unattended and barely noticed, does not qualify. But just because restraints can be and are too often abused doesn�t mean they don�t have an appropriate use. A friend suggested they can work like socking a punching bag. Restraints, and struggling against them, have occasionally been more effective in calming me when I am in a frenzy, and doing so more quickly and effectively, than massive doses of tranquilizers with their intolerable side effects.
When voices shriek in my ear that the doctor wants to kill me, that I must run or escape, and I am restrained to prevent this, I can fight against them without injury to myself or others and simultaneously expend enough energy to tire of fighting. Sheer fatigue by itself can work to relieve my terror and reduce the emotional valence of my symptoms. But the situation must be constantly monitored by someone trained to assess when a crisis has passed and compassionate enough to call for their removal at the earliest moment. Otherwise restraints are less therapeutic than a cruel way to baby-sit a patient no one has the time for.
My sister is a psychiatrist who for years ran an in-patient unit at a psychiatric hospital. She oversaw the voluntary use of restraints, restraints requested by patients aware that they were getting beyond the point of reasoning, beyond a threshold of self-control, when the safety of all was in jeopardy. She knows that patients will ask for something that helps them, especially if it does not involve humiliation or punishment. Requests for restraints in her hospital were honored; they meant patients knew when they were escalating and were asking for help. Also it meant they preferred not to be drugged into oblivion for what was a problem of the moment.
Today, this is not possible in most psychiatric units, because restraints have been relegated to the province of punishment, their therapeutic use completely discounted on the one hand, as the rate of use for the convenience and benefit of overworked staff has increased on the other. This is unfortunate, because the hospital culture that indicates restraints are used only when patients are �bad� could just as easily promote them for patients� benefit, for those patients "good" enough to know when they would be helpful. In any case, they must be applied in a non-threatening way, with the understanding that they will be individually assessed, and as brief as possible.
Psychiatric units justify many measures during a crisis, but why wait for a crisis? Patients, aware that they are getting out of control, may be unable to stop themselves. That doesn�t mean they don�t want to. If patients, and nursing staff, can be taught that restraints are not punishment but a genuinely helpful form of therapy, and if some patients come to prefer restraints to a �chemical straitjacket,� why not make them available by request before they are required?
Well, my sister and I are just about finished with the edits on our book, which will most likely not be be called SOLO FOR TWO after all, but some other name that we and the editors finally agree on. If anyone has any ideas for a title, feel free to share them. I need all the brainstorming people can do!
I don't know how the book will be received, though I understand that people (meaning you guys) are enthusiastic pre-publication. I worry, though, as I always do, that it won't live up to expectations, that it won't help anyone at all, not families, not friends, not even my "colleagues" so to speak, that it will seem no more than an exercise in self-indulgence. That, of course, is not our intent, but you never know how a piece of writing will affect, or not affect (my biggest fear), the reader.
Self-doubt as always assails me. I have to keep telling myself we are doing the best we can do, and that is ALL we can do.
In the end, it may be more of a crap shoot than any writer wants but must live with. Key, of course, is publicity, which the publisher is responsible for. And if they aren't enthusiastic enough to push the book, then it's sunk. Hey, here's an idea: maybe you could all go to B + N, once we have the title, and rave about this "wonderful, terrific book" that's coming out and how you can't wait for it appear in the store!!! No, I'm just joking. But so many books that are perfectly good, even wonderful, fail because of improper placement on the store shelves or not enough enthusiasm and publicity on the part of the publishing house...Or so I hear and have read in my many books on writing and "the business."
Just sharing some late-date anxiety. Hope you don't mind!
PS For those of your experiencing excessive weight gain on Zyprexa, I wanted to tell you that I switched a few months ago to Geodon 80mg three times a day and recently added Haldol 5mg twice a day and I must say these two together seem to be just as, perhaps more effective than the Zyprexa I so hated. That plus I've lost a good 55-60 pounds just getting off that hated drug! This has been my experience, but if it helps anyone else to know there is another helpful regimen, that is my purpose in sharing this little tidbit of info.