Tag Archives: plots

ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

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Photo by Sr Jo-Ann Iannotti OP

I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers  and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it  and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else,  this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing.  If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…

Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it!  It exquisitely represents both the spirituality of this place as well as peace and peacefulness.

Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.

Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!

I am drifting though…forgive me.

One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!

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Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it.  I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display  that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.

That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear  gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.

So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such  a fundamental level.

I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…

FOR A FRIEND SUCCUMBING TO AIDS, 1980s

For Roland

This could be your whole life,

thumbing a ride to wherever the cars are going,

the casual, tossed out hellos and good-byes

that turn around the axle of your quick life —

that far, just that far, and then you will stay,

forcing a stranger’s town into the shape of home.

Yet you’ve lived a dozen lives — in the Keys

with the one you finally loved, in western Portugal,

Nova Scotia. Last year, already marked, you spent

the winter in your bed,which just fit in a backyard shed

in Vernon, Connecticut. And there was a life

to accommodate each place, its sweetness and pain.

When we met, you taught me the local architecture,

the difference between Georgian and Greek Revival,

and you thanked me for the poems you gave me.

Then you called late one night, drunk enough to over-

dose. Thoughtlessly, I rescued you, a dying man…

You never forgave nor spoke to me again.

Now once in a while a car slows, pondering

your beard, your emaciation, the known and unknown

risks, sees you finally, and explodes away from the shoulder

where you stand, all its doors locked simultaneously

against those Kaposi’s inflorescences that stain

your dying…Roland, Roland, don’t you know

we all die in shame and alone? We die, perhaps,

not far from home, or perhaps, like you, wandering,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

Lyme Disease, Mental Health, Vision therapy

Vision Therapy and Schizoaffective Disorder

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I combined two subjects in my heading –and they are related — in order to “recapture” as many readers who might come back looking for an entry after three weeks of nothing…

 

I’ve been in the hospital. Yes, a relapse of schizoaffective disorder, due, I think, to stress, poor sleep, worse eating and terrible time management,  in tandem with a flare-up of the underlying infection  of Lyme disease (for which I’d had a positive Western Blot test as late as 2006, five years into treatment).

 

I was in fact overwhelmed, sad, depressed, tired and sick of it all. I wanted to write and do my sculpture and it seemed as if everyone wanted many and more pieces of me and my time. Despite all the successes of the past year, I felt hopeless to change things On Effexor, after a long two and a half weeks, my spirits rose and my hopelessness diminished. I was able to unblinder myself, removing the brimmed hat I wore day and night, and enter the world again (in terms of mood, the affective part of the disorder).

 

In terms of the schizophrenia aspects of the disorder,  this hospitalization was brutal. I heard my name, my full name, being called 100 times an hour, on any given day. When people spoke to one another within my view, I could see (and heard it) that every word  spoken between them was my name, and nothing more. The entire ward had nothing better to do than to persecute me by saying, yelling, whispering my name.

 

Then one day something that really scared me, they whispered, “I’m choking myself. I’m choking myself. Pam, start choking yourself. Start choking yourself.” Always, almost always before this time, when faced with such “command hullucinations” I blindly obeyed the directives of the “dictator-voice,” too afraid to do otherwise. This time, rather than obey and do as he or they insisted, I ran out of my room. I looked up and down the hallway for anyone — anyone! — a mental health worker, a nurse, even the ward secretary would do.  No one .

 

What to do? What to do? I raced back to my room, stood  just inside the doorway. No, I could not stay, not with this voice assaulting my brain. I had to find help. Somehow. Then I heard someone coming down the hall, briefly stopping at every room to check on its occupant: the mental health worker “on the floor” which is the say, the one who was assigned to do fifteen minute checks that evening. Stacy, with the long dreads, was  just the person I needed.

 

 

“Stacy,” I whispered urgently when she came nearer. “Stacy, I need to tell you something.”

 

“What is it, Pam?” she smiled.

 

“They’re telling me to start choking myself.”

 

“Who is?”

 

“They are, the people who talk to me, the voices if you need to call them that.”

 

She frowned. “You aren’t going to act on that, are you. Now, come. Let’s find your nurse and see what he can do for you.” Then she took my hand and led me up the hallway to the medication room where Paul was doling out nighttime pills too early for my taste. “Paul, I think tonight, Pam needs her antipsychotics early. What does she have?”

 

He told her what I was taking, and they murmured together a little. I assumed they were discussing what I’d just told Stacy. After I’d taken the pills, Stacy again took me by the hand and walked me down the hallway to my room.

 

“You gonna be all right now?” she asked.

 

I nodded, dubious that the meds would do the trick, but hopeful in any event. I knew now that I could in fact ask for help and be given it, that I did not have to obey the voices not even when they demanded action.

 

But that was only one of many, many incidents. I won’t bother to recount them all, or even just one other, not right now. All I want to say is that the voices never did let up until the final weekend, due to stress caused by a very disruptive patient. It was only the weekend before the day I was discharged, when she’d been booted out, that the ward was tranquil enough for the voices to diminish, and then by Monday begin to cease. Yet even at the very same time, another problem reared its head…

 

This is chronic neuro-Lyme: plots abounding, exaggerated startle, acute dyslexia, increased paranoia and rampaging ideas of reference…I had them and worse in 2000 during the massive psychotic break at Y2K and I had all or most during this hospitalization in a diminished form, when the antibiotics were changed and failed to protect me from a recrudescing infection.

 

Now, why or how does Vision Therapy tie into this? It is related because while in the hospital, that closed-in space with blinds on the windows so the view is largely obscured, I lost my ability to see 3-D, to perceive depth and space. I even lost my ability to read or untangle letters on the page or properly read the words on a computer screen. I noticed this one day when I looked to see if the pen was clearly above the paper, and found that I could not easily say that it was, that I was deducing it from the overlap and the shadows. Occasionally, depth perception would flicker on then off, and it was delightful, but most often I found it was off, and decided to let it be. I knew how to restore it, that it could be restored, and that Dr D would help me if I needed help. So I figured, the worst would be I’d have to re-train my eyes, but the best part of that would be the thrill of re-entering the beauty of the borderline between 2D and 3D.

 

In the follwoing posts I plan to describe the Vision Therapy sessions that help me regain my depth perception, and also in others discuss aspects of schizoaffective disorder, the schizophrenia aspects as well as what I know about depression.

 

Stay tuned…

Brain, Mental Health, Psychiatry, Schizophrenia

Delusions and Paranoia: past experiences

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During the second part of what I call my Y2K Meltdown, when I was hospitalized for 3 months, first in central and then in southern Connecticut, I was extremely — but what I call serially– paranoid. What I mean by this is that plots occurred to me one after another seemingly without end. A new conspiracy would “appear” out of nowhere, as of course paranoid plots tend to, generated as they are by that two step process, described in the “Paranoia and Hallucination” entry. It would “do its thing” as they say, run its course, wreak its own havoc, then having done so, pop or be defused, and disappear. But almost immediately and, without my having any sense that this was happening or had any pattern, in its place another conspiracy would arise to take its place.

 

An example: at one point during that same hospital stay, having smelled what I was certain was marijuana coming from the art supplies room, I became convinced that the staff had been infiltrated by drug dealers selling weed and stronger drugs to patients. I’d mentioned the smell — no doubt some innocuous meaningless odor, if it existed at all — to a male nurse, and the look he gave me convinced me that he was involved. As a result, I realized that my knowledge of the presence of drugs on the unit made me dangerous to him and the other dealers. I felt frightened that he might retaliate, threaten me, or worse, hurt me when no one was around or could help me or know he was responsible.

Terrified enough to start talking, I told the doctor, and I called my sister and begged her to come in and sign me out. Please take me anywhere else, I begged. I would agree to any other hospital only get me out of there where I was in mortal danger. It was, I knew, after visiting hours, indeed it was after bedtime, but she had to come in and get me, now, or I might not survive the night.

 

Incredibly, she actually came in, if only to make sure that the staff was aware of my extreme distress. I knew only that she came to check out the drug situation and was devastated when she left without taking me home with her, though by then she had managed to “talk me down” some, convince me that I was in less danger than I believed, and that at least some of the staff were on my side and would be watching out for me all night.

 

Somehow, her words got through to me, and by the next day, the matter of the drug  conspiracy was resolved, though I cannot recall exactly how.

 

All I know is that as the urgency of that situation ebbed, I became aware that a new patient had arrived on the unit. Cally wore a raglan-sleeved sweater made of what I immediately apprehended was a washable wool yarn called “Candide.” Now, I knew only one other person aside from myself who knitted sweaters like that made of Candide yarn and she was the woman who had taught me to do so. “Lisa” not only knitted many such a sweater but did so for her long lost daughter, “Cally,” who had been given away for adoption many years before. The fact that “Cally” lived in North Dakota, last I knew, was of no importance to me. What seemed of paramount, vital and decisive importance was 1) the Candide wool and raglan sleeves, and 2) the fact that Cally appeared to have Lisa’s ballet-slender body type. These two coincidences in fact absolutely clinched the matter. Cally was “Cally,” wasn’t she?

 

These equivalences might not have been so critical to me, except that, it suddenly seemed that Lisa had died. She had committed suicide, so the message was communicated to me, and I had now to inform Cally of the fact that I’d known her mother way back when. I felt it was incumbent upon me to tell her what she had been like, that was the mission I’d been given. But  first I needed to ascertain beyond a shadow of a doubt that this Cally was indeed Lisa-my-former-friend’s daughter “Cally”…

 

If this was not a true paranoia that instantly arose following the death of the drug dealing plot, it was a delusion coupled with the felt urgency to act on what I was certain I knew (not so different from the marijuana delusion after all). And it was only one of a long string of plots and serial delusions that followed one upon another almost without a break that winter and spring. Just as I described in my entry of the other day, not once in the midst of any of these conspiracies or delusions was I cognizant of what was going on or able to step back and analyze the situation with any objectivity. At that time, I did not even have the tools I have now to dissect an incident after the fact: I was at the utter mercy of my brain illness, without any insight whatsoever. Now, at least, I can step back after the experience and say, Wow, I must have been really paranoid to think such a thing, or That was a hallucination after all…My goal, and a real triumph would be to recognize these things in medias res, that is, right while they are happening, but so far that does not seem to be possible.