Schizophrenia and Sleep: Is Psychosis a Waking Nightmare?

I believe that I have written before about having narcolepsy as well as schizophrenia, and while it is up for grabs whether or not this sleep disorder as well might be caused by Lyme Disease, at this point it seems moot in both cases. I still seem to need the psych meds as well as the narcolepsy meds, so what difference does it make if the Borrelia bacterium originally caused the disorders? It seems that I have them now, so I must go on from there…

 

Anyhow, ever since college, at about age 22, I have had a terrible time with daytime sleepiness, no matter how much sleep I got at night. I could never stay awake during the day unless I were walking or physically active. Once I stood still, and god forbid if I sat down, I was immediately subject to an overwhelming urge to sleep and it seems to dream, the latter not always coming after the first.

 

The dreaming before I feel asleep only grew worse as I aged, until in my late thirties and early forties I began to have to ask others whether I dreamed something or if it really happened, because I could not tell the difference. I did have a kind of a touchstone, the very fact that I had to ask the question, seemed to mean that it did not in fact happen, but I never quite trusted that understanding until after I’d gotten the denial. In my late forties, it was happening every day, and in addition I was hallucinating visually, not scary things, but hallucinations like stories that I could discuss with Dr O objectively, but bizarre enough that she was concerned. It wasn’t clear how much of this was REM-sleep intruding into the waking state, a phenomenon of narcolepsy and how much was schizophrenia, especially when the hallucinations spoke to me and told me to harm myself, and I obeyed them.

The reason I relate all the above is that we eventually solved the problem, at least this one, and while I told the tale on my other schizophrenia site I feel it is important to tell it here as well.

 I haven’t wanted to muddy the waters before now or get people’s hopes up for a drug that might help one person in a million. But who’s to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.

 

In 2004, I did something quite desperate. In response to voices telling me to immolate myself, and on an impulse to put an end to their tormenting me, I set fire to my left leg, with the result that I had third degree burns and skin grafting. I had burned most of my forearms before this, but incrementally, and had burned out cigarettes against my face too, but have never done anything quite so dangerous as this. I realized how close I had come, pouring lighter fluid over me, to setting myself on fire, not to mention the building itself. It could not happen again. So the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor’s orders changed.

 

I made up a contract, after I got out of the hospital, and gave it to my visiting nurse, saying that I would not refuse a single dose of medication ever. And in fact, I did not. That certainly stabilized me to the point where I stayed out of the hospital, though I didn’t feel particularly well. Then, I finally agreed to try a drug Dr O had for a year been urging me to take. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory went, the spells of waking dreaming would  happen less often, I would need fewer stimulants, and the sleep attacks would cease…among other things. 

 

Xyrem is not a drug without a difficult past. Once known as the “date rape drug” it has faced bitter controversy. Hearing were held in congress over whether it had any therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be not to ban the drug outright. Thanks to their efforts it is still available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.

 

It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. A liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice or non-acidic kool-ade and taken just before bed. It’s bad tasting — actually on the salty side — so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!

 

When I first started taking it, falling asleep terrified me, because I just tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for weeks, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear than anything else. After about a month, though, I was able to take the drug without trouble, except for the middle of the night awakening, which bedevils me to this day…

 

I found a website, MyCalls.com where you can set up a schedule of recorded messages that they will play at a certain time at night when they automatically call you to wake you, but I find that I barely hear the phone after a certain number of calls, and when I do, I simply pick it up, press one, to cancel the call, and hang up, then fall asleep again. Even if I don’t manage to do that much, I know the phone will quit ringing eventually, and that the calls will cease after three repeats. I’m lucky if I manage even to hear them at all; if I’m in a really deep Xyrem-doze at the time I’ll simply sleep right through.

 

The effects of taking Xyrem can be felt within two weeks if you’re lucky, though it takes months for some, and for me it was a miraclous 12 days. My improvements however, had nothing whatsoever to do with narcolepsy, which was the strangest thing. Improvement in that sphere did take months to appear. What improved were the last symptoms of schizophrenia.

 

The last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she, and certain other people, looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that  the voices were only false perceptions inside my head.

 

Since we hadn’t started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don’t have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her,  it has worked for no one else and she does not recommend it. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who’s to say what it would do in others with schizophrenia…

 

Now it is 2009, a couple of years after I wrote most of the above. I would like to add  the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day.  That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could…My apartment seems to “fall apart” and it is hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can’t get back before I get exhausted).

 

 

Exhaustion is my biggest fear…that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare…And the outcome has sometimes been negative to the max.  I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I’m always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital…

 

Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn’t know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, “Oh. My. God.” Then she rcovered a bit, “You look wonderful, Pammy, normal.” She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up, (never again!) as if I actually cared how I looked. She couldn’t believe it. She said my walk was almost normal, that I was less awkward in my body. She felt like she had her twin back.

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.

 

Vision Therapy: Update

On Tuesday, the day after the big snowstorm in this New England state, I managed to make my appointment with Dr D,  vision therapist-optometrist. I had thought that the problem, which was that I was having trouble reading due to the letters becoming jumbled and dancing around the page again, was my “constant or near constant exotropia” come back to haunt me. After three weeks spent largely in one small room in the hospital, a good part of that time using either glasses without prisms or at one point no glasses at all (because the lens had fallen out and I had no screwdriver to fix them with) I thought I’d “lost it” i.e. everything I’d spent so much time learning in VT.


Dr D did an exhaustive exam, or so it seemed to me sitting in the chair, my eyes getting wearier and wearier (!). However, when she was through, I was surprised to find out that the exotropia was actually quite a bit better, that in terms of my depth perception, I needed nothing more than to restart the exercises and perhaps spend some time looking  at  anaglyph pictures with red/blue glasses again — to reestablish the habit of seeing 3-D. According to Dr D I had all the ability to perceive it that I had had when I left her.

 

So what was the problem? Well, so far as she could determine, my right eye seemed to have become more myopic than before, enough so that I needed a new prescription. She seemed to feel that it was because of this that my vision felt jumbled, especially after reading a little while. Indeed, when she gave me the card to test my near vision, I could see every line quite well, as I usually could, since I have excellent near vision. But I knew that within minutes of reading a page of text, either in a book or more especially on the computer, I would begin to have difficulty (as I am even now as I write this). She felt that the increased medication was likely the culprit, and that if it was to be kept at this level, I should probably have my glasses changed to accommodate to it.


So all’s well that ends well. I left feeling a good deal cheerier than when I went in, knowing that I did not need to begin all over again, but only to do a tune up by myself, and get a new prescription if my meds are not going to be changed any time soon. (I may wait and see about that, since I do want to reduce the Abilify to a “humane” level, rather than keep it so high for good…I did well on 20mg for 18 months; I don’t see why I would need to stay on 35mg permanently just because of one relapse…Surely the increase need only be temporary…)


Tonight, I started “showing my brain” it could perceive the 3-D images that my eyes already see. I looked for my white, marked pencil for pencil push-ups, but couldn’t locate it, nor could I find the Brock string, though I had carefully stored both somewhere. (Lord help me, I am always doing that: packaging important items carefully with labels etc, putting them away for safekeeping, then promptly and completely forgetting where the hell I put them!) So instead, I put on my red-blue glasses and went to the internet site where I knew there were useful anaglyph pictures to get me started. If you happen to have red-blue or red-green glasses, perhaps from a three-D movie or graphic, you might like to check out this particular site, where the shots of Barcelona, and especially Gaudi’s work, are spectacular: http://www.3djournal.com/001/gal_Barcelona_3D.php

 

I was pleased to find that after some initial difficulty, I was soon able to resolve many of the photos into layers of depth, even a couple of pictures that before now I had not been able to see as three dimensional. What is more, upon taking off the glasses and looking around me, the world  changed: suddenly, amazingly, the magic was back…Space was present again, holding things in its embrace, embodying even the flat surfaces of things, so that they now implied the substance that lay behind.

 

What do I mean by that statement, that space embodies flat surfaces so that they imply the substance that lies behind? Well, there is a book behind a flat book cover, no? Without the ability to see 3-D, one would not be able to know, without being told, that something was a book, and not merely a picture. The “bookness” of the book, the substance, the three dimensionality can be seen because of what space allows us to see, the continuity of a surface beyond the visible front. When I had not the same 3-D power of vision that I have now, I did not in fact see this continuity, so that unless I “knew” that a surface was a book, and therefore had the substance of a book behind it, I could only perceive the flat picture/cover presented me. It looked no different to me whether a picture, flat against the shelves, or a book, cover facing outward, and I would not know which it was, if I were not told. Of course, there can be monocular clues, clues like shadows and shading, clues like the oval on the top of, say, a glass or the curvature on the top of a book’s spine, versus the flat line of a picture. All give hints, but barring those freebies, space and depth perception are what tell most people that an object has substance, are what implies continuity beyond what is visible. Without the ability to know objects continue in space beyond what is strictly visible, you do not see the same object that the person with depth perception sees, much as you might believe you do. You can only know what you are supposed to see, say, the book, and then see it. But you do not first see the book, and then know it.

 

For a better example, take that palm plant I used to use as a touchstone for whether or not I could see properly. I knew it was a palm plant, yes, because it had long and multitudinous leaves, a mass of them. Now maybe I would have noticed this anyway, being an amateur botanist all my life, but what I did not do because I did not see them, was try to count the leaves, or find out where they were attached…Was there one stem or several, was it bush-like there, or similar to a tree? Looking never occurred to me, because it was just a jumble of green. I needed to be told what was there, in order to see or even notice it. Without that information, it escaped my vision; I failed to see, I failed to so much as think about it.

 

But that was before, now it is different. Now, and tonight in particular, the magic was back and sudden 3-D-ness made everything suddenly pop. Once again, I am filled with thanks for my original loss of depth perception, simply because in the regaining of it, I experienced, I believe, a sense of beauty that may be unique to those who, like me, have had to learn or relearn depth perception in later life. It is not something I regret in the slightest. If I missed it for some large part of 56 years, it doesn’t matter at all, because I have gained so much  — well, I have no other word for it — magic now that it makes up for every minute when I didn’t have it or know what I lacked. After all, the past is gone, the present is all we have for certain, and the magic is here and now. I’m more grateful for it than I can say.

Schizophrenia: “Divided Minds” and Recovery

The day our book, “DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia” came out, in mid-August 2005, Carolyn/Lynnie, my twin sister, and I had three engagements scheduled, including a radio interview, a TV appearance, and, that evening, our first public  speaking/reading engagement at a local library. Due to advance publicity and widespread interest, it turned out that the venue had had to be changed to accommodate all the people who had called ahead indicating they planned to attend: instead the usual small room at the library, we were to speak in the auditorium at the Town Hall.

 

I made it through the day all right, but by evening, I was beginning to become symptomatic, hearing people unseen whispering over my shoulder and seeing familiar dancing red particles I called the “red strychnines.” Nevertheless, I was determined to make it through the final “gig” of the day in one piece. I was, however, getting more and more nervous, despite taking my evening medications early. Finally, Lynnie suggested I take a tiny chip of Ativan, not enough to make me sleepy but enough to calm my anxiety. I resisted up until the last minute, when, finding the stress unbearable, I agreed to it. She ran to get me some water, and came back with two cold bottles that had been set aside for us all along.

 

Then, we were on. Lynnie had done some speaking before, and seemed to me to be amazingly relaxed in front of the 340 people who overflowed from the first floor onto the balcony above. When she introduced me to read a section of a chapter I had rehearsed over and over until I could do so with the proper ease and feeling, I got up, trembling, and walked to the podium, wondering if my voice would tremble also.

 

In the book’s margins I had everything written out, from my introduction to the passage to instructions to myself on where to slow down, where to raise my voice, where to pause and so forth. I raised my head and looked at the audience, then looked down at the text and taking a breath, began.

 

I was surprised to hear my voice sound as strong as it did and wondered how long I could keep it up, knowing how fatigue and awareness of the audience could make it weaken and go tight on me. Indeed, after a particular spot in the book brought painful laughter from some in the audience, I could barely speak. I had coached myself for this eventuality: Breathe, I told myself silently. Breathe through it, keep reading but breathe slowly and calmly as you read and your voice will relax and stay loose. To my intense surprise and relief, it worked. I made it through the entire segment. “Thank you,” I murmured, indicating that I was through,” though it was obvious from the text that the piece had come to its natural end.

 

The audience burst into applause. People stood up, all of the audience stood and clapped. I didn’t know what to do. They were applauding me? What had I done to deserve this? Even Lynnie was on her feet and smiling. She nodded at me, telling me it was okay. Her eyes seemed to sparkle, as if they were full of tears. My own eyes were wet and I was too embarrassed to wipe them…

 

Lynnie then gave a speech of her own, a wonderful speech, ending with her asking me to stand up. and this too received a standing ovation. We looked at one another.. Who’da thunk? our eyes asked in pleased but puzzled amazement. Then it was over. But not quite. There was still a long line of well wishers with books to be signed and many people who wanted to talk to us. I was so tired that I let Lynnie field most questions, and   hid behind her or busied myself signing and pretending to pay attention to her, so I didn’t have to talk myself. In truth, I was exhausted, and though elated the evening had gone so well, on the verge of tears from sheer relief…

 

When we left, there were only a few people remaining in the hall. The library employee who had given us the opportunity to speak, told us it was one of the best attended events he had ever scheduled. We thanked him or Lynnie and Sal, her new boyfriend, did, I mostly lagged behind, and  followed  as if in a trance. Then we headed out into the warmth of the August night.

 

After the success of that night, the book tour, and later our paid (Lynnie was paid, I was not, as she had to take time off from her practice to do so) engagements became easier and easier, especially after we worked up speeches of our own and developed a rhythm and interaction with one another that seemed to work well. But it was wearying, and I wasn’t always taking my medication as I was supposed to. I still hated Zyprexa, which we had cut to 2.5mg plus Haldol and Geodon, and so I skimped on  it as often as I could, as well as the deadening Haldol. Geodon was the only antipsychotic I was on that seemed to have no objectionable side effects, but it clearly was not effective by itself. So even as we made our way out to Tucson, AZ I was skating on the edge.

 

2006, fall. I had made it 18 months since my last hospitalization but fatigue and exhaustion and it may be (I do not now recall for certain) not taking all my medications as prescribed conspired to allow in the same hallucinations that had such devastating consequences back in 2003/4. I was to set my whole body on fire, they told me, not to kill myself but to scar myself so badly that all would shun me, leave me alone, which was what I deserved, and what they ought to do in order to be safe. Because I could not promise not to act on these commands, I was hospitalized not far from where Lynnie lived at the time. I spent a month there, a very difficult and painful disruption in my life about which I have written earlier (see the entry about “trust”).

 

I was hospitalized it seemed every five months after that, until 2008, when I managed another 18 months. But life in between those stays was improving. Although we still did occasional speaking “gigs” we slowed down on those a great deal, so my time was more my own. I had made a papier mache llama once in 2004 when I was hypomanic, and it had taken all year to paint it, after I’d come home from the hospital no longer high. But the fun of it had stuck with me and in 2007 I made a turtle, a huge tortoise and took a couple of months painting it. In between I created some small objects. Then over December 2007 and January 2008 I built and painted my first large human, the Decorated Betsy. I was off and running, with Dr John Jumoke coming in April, May, and June of 2008 and the Shiny Child Ermentrude started in October of 2008 and finished in early January 2009.

 

Also in this period of time — between 2005-2009 — I put together my first manuscript of poems written over a 20 year period about living with schizophrenia, and another manusript of more recent poems, not about schizophrenia, and sent the first one off to the press which is publishing it, in their series on chronic illness. Once it comes out, probably in March, I will be free to finish work on the second. I will send that one out  and hope it too gets published as I prefer those poems to the ones in the first, though I have had rave reviews on that one, at least from the people who have seen it so far. I, of course, as the author, can only view it through the jaundiced lens of self-criticism and self-hatred…

 

Plus ça change, plus la meme chose. (and some things never change…)For all the seeming success I have had in these past three years of recovery, I still struggle with abysmal lack of self-regard, and chronic paranoia. If and when I find myself a new therapist (I must soon leave Dr O, as the travel time 1.5 hours there and 1 hour home  has become too much for me, and too it may be that she will no longer be continuing her practice, though I do not know that for certain…But in this economy, I can no longer afford the ride there as well as her fee. And I think too it is time to move on…both for her sake as for mine.) ..if and when I find a new therapist, it is those two things, self-esteem and the very right to have it, and paranoia — how to either end it, or live with it, are my two major goals I want to deal with, head on.

 

But then, maybe that’s all we have ever done, Dr O and I, dwelt forever on my lack of self-esteem and my paranoia, getting nowhere for all that. Perhaps she had the wrong tactics, the wrong methods, or else perhaps I am hopelessly mired in  my own worthlessness and suspiciousness — for lack of a better word, though paranoia means so much more than that…

 

In any event, I have tried here to describe in one entry a little of what has gone on for me since the book came out, since the beginning of my recovery. But my recovery truly began when I’d started Xyrem some months before. That is the drug that caused Lynnie to exclaim upon seeing me, two months after I’d started it, “Pammy, you’ve changed. You look wonderful, you’re back.” Xyrem, book, papier mache, poetry…all together gave me parts of a life that became somehow worth living, and it is worth living, even if at times of dark forgetting, as in February, I lose track of the one fact I need most to remember.

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? 

Vision Therapy and Schizoaffective Disorder

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…

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… 

Up All Night…

 I was up all last night and most of the night before, checking out various places around the state and their relative, which is to say their absolute elevations above sea level and comparing them, hoping to find a suitable place to relocate. I need to move soon — within the next year or so — as the Antarctic ice cap could slide off at any time, not to mention the possibility of Greenland producing such a profusion of freshwater that sea levels would rise precipitously and catastrophically…

 

What am I talking about? Global warming and one of the most predictable consequences of climate change…. The scenario, as I foresee it, is this (and keep in mind that I am being utterly selfish, thinking of no one but myself here, no one but me and my own small circle of family and friends…): I live in the Connecticut Valley, inland it is true, but at sea level with nothing between us, nothing literally between my building  and the ocean  but the valley floor. If and when the ocean level rises there is nothing that will stop the water from simply flowing right on up the valley. It will not even need to climb a slope as, according to Google Earth, this building is literally only 10 meters above sea level. Even if there is some ground higher than that in between, the water will simply find a route around the high points, making islands of it, and continue flooding wherever else it reaches.

 

Why am I making such a big deal of this? After all, I’m 56, I’m practically elderly. I should think of the younger ones who…But I admit it, my biggest fear in the world is drowning, and I cannot / will not sit around and wait for that to happen, no, I must do something to prevent such a fate now, while I still can. According to Google Earth, even my twin sister is on relatively high ground  – 600 feet – compared to me, even though she is closer to the shore and further south. Nevertheless, she has not put out an invitation, even when I pointed out the disparities of  our elevations. My younger sister, too, resides in the Valley, but she is farther north, in Massachusetts, and at 66 feet is somewhat higher in elevation. However, just a couple of miles out of town, the area not far from her is 300 meters above sea level, so she can get out of Dodge easily when the floods come. I wish she  would move so she wouldn’t be in harm’s way at all. I simply know that she will not listen to me if I bring it up so it is useless to try to get her to prepare. In the meantime, since I cannot count on my twin or any family member or friend to take me in, I must try to find an apartment on my own. I must  get myself to a new town — which one?– somewhere in the northwest hills, where the elevations are the highest and pray that the worst of the worst scenarios does not happen. 

 

Yet I know it will, and I cannot bear to think of the hundreds of millions, possible a billion people who live along the world’s coastlines who will also be in danger when the flooding starts. My concerns are neither more nor less serious than any of theirs, only more conscious. It could be better not to be so aware of what is to come: ignorance of the inevitable  must surely be less painful than the agony of knowing a devastating future without any ability to change it.

 

When I contemplate the certainty of mass panic, the evacuation and stampede inland, the fruitlessness of it all, my heart pounds with a horrible anxiety, being unable to bear thinking about so many people suffering…It is then that I wish to be dead myself, wish to have it all be over. I  myself have nothing to offer those suffering millions upon millions, though god knows I would if I could. If I myself cannot save them or help them, I cannot bear to witness the end of the world either. No, I would rather not be there for it. If a billion are going to die, then let me die before they do! I do not want to be left behind in such a world–

 

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Someone ought to do a film on American prisons and the making of a “violent criminal”– from his/her start in the State system of juvenile care (foster, psychiatric and otherwise) to juvy to the vicious cycle of imprisonment and abuse in the so-called “correctional system” until institutionalization and/or brutal three strikes laws make it permanent…Those who somehow think that most violent convicts freely choose to become violent are fooling themselves or are willfully ignorant: the prison system creates violent criminals, period.

 

 Abu Ghraib did not arise de novo, out of some new bizarre impulse from “rogue military elements”. No, we exported U.S. prison guards to Iraq who knew the tricks of the trade because they already used them in American prisons. Yes, the hoods, the dog leashes, the humiliating nakedness and don’t forget the torture — all are regularly practiced, with impunity, in American prisons. Yes, even President Barack Obama still exempts as legal and reasonable, the use of torture in prisons and during the punishment of prisoners.  

 

In fact, the Geneva conventions read as follows: Article 1

 

For the purposes of this Convention, torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.

 

So even the Geneva Conventions agrees that while torture consists of inflicting severe pain on a person by official instigation or consent,  it seems to be allowed in the case of prisoners….EXCUSE ME? Prison guards can beat a manacled naked prisoner senseless and leave him in the “hole” for weeks, even months, no one saying a word about it, and it is fine with President Obama and fine with the Geneva Conventions? Well, I don’t think it is FINE at all. Especially not when the so-called resistant prisoner happens to have mental illness and is in “seg” because of it. Especially not when the prisoner is an 18 year old who just graduated from juvy, where he was sent after having spent years being shunted from one abusive “home” to another, molested in one and raped in another…and where he was not, beaten until he ran away and was sent to reform school. Now, in the Big House for armed robbery, is it any wonder he is both scared out of his wits and violent?

 

Pardon Bush? No Way…

I watched the inauguration the other day and wept. I wept for joy that we, the American people, have finally elected an African American, and a Democrat committed to Democratic values, to the presidency of this gravely wounded country. And I wept in grief that we have allowed ourselves to have been so wounded by the very men who were elected to serve us as leaders.

After the long dark night of the past 8 years comes the start of a new era, one I hope will be characterized by more truth and humanity than so-called “compassionate conservatism.” That of course was only window dressing to conceal Bush’s robbing of the national coffers on behalf of his cronies and his wholesale, deliberate abrogation of our essential rights, both democratic and human. Contrary to what Mr. Cheney asserted in his final interview, the administration did torture, did wage illegal wars and did despoil the air, land and oceans for corporate gain. “On-message” lies repeated over and over do not make the opposite true, however well-honed the practice.

From the secret energy cabal assembled by Cheney to our shameful lack of preparation for 9/11  (but once and for all, just how did the WTC towers and a third building at the site come down in a manner virtually identical to controlled implosions?), from the lies that permitted the vote for the Iraq war to the gutting or disempowering of so many regulatory agencies, OSHA to EPA — the administration now past is guilty of what could possibly be dismissed as political misdeeds. But to write off Bush’s deliberate breaking the FISA law and his decision to ignore the Geneva Convention and rewrite laws to permit torture is to collude with him and essentially to agree that he was right to do what he did.

No, I do not believe we can or should just “get on with things,” or let Bush get away with scot-free. I do not mean that we need to get revenge, though my angry heart harbors, I admit, some impulse towards schadenfreud. I think there is a difference between political misdeeds and crimes for which even presidents ought to be held accountable. And I believe that if we ourselves do not hold Bush to account for such issues as torture, the rest of the world would be justified in charging him with crimes against humanity.

I thank god that Bush cannot in fact issue himself or Cheney or anyone else a “blanket pardon” — not because he wouldn’t wish to, but simply because no one can be pardoned for a crime with which he has not been charged. It is this fact, that we did not impeach Bush while in office, that will permit charges to be brought against him in the future. I know that people have a tendency to want to move on, to forget (if not forgive) a past they cannot change, because it is easier than dealing with the messiness and difficulty involved in bringing someone like a former president to trial. But I believe it must and should be done. Too many have been grievously harmed and too many continue to suffer the consequences of Bush’s crimes. We do not have the right simply to  “forget” them, victims or perpetrators, simply because it is easier on our stomachs. 

Delusions and Paranoia: past experiences

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.

 

Paranoia and Hallucination

Argh… An incident of paranoia and, hallucination unrecognized by any of us, including me, caused certain people close to me unnecessary distress this week.  I won’t go into the details of that particular incident, except to say that I had absolutely no appreciation for the fact that I was both paranoid and under the influence of false perceptions and so took what I hallucinated as solid reality, with predictable consequences. Since I felt attacked and “heard” corroborating evidence, when I accused the responsible parties, as I felt certain they were, you can imagine how people reacted…Anyhow, I don’t really know how to make things right now, since the accusations themselves seems to reveal a fundamental lack of trust, however paranoid and generated out of the whole cloth that is my imagination going full tilt…I don’t imagine it would  help anyone much to say that this has happened many many times before, and that I have accused so many people of so many outlandish things that it embarrasses me even in the remembering…Nor that some, no, most of the accusations have had utterly NO basis in fact other than the predisposition of my brain at that precise instant in time. They didn’t even reflect any longstanding attitude, so much as a temporary, very fleeting feeling that burst out as full-blown paranoia-of-the-moment.

 

Be that as it may, instead of dissecting this particular incident, I want to discuss paranoia of the rather prosaic sort that afflicts me these days, rather than the grandiose and global kind — involving the usual suspects like the CIA plus certain shadowy figures known as The Five People — which used to. These days, paranoia — which I’ve been taught to recognize and deal with by my psychiatrist, though success at either task remains elusive as best — reveals itself most often at the grocery store or the post office or the lobby of my “elderly-disabled” apartment complex. Or it might pop up in my suddenly suspecting  theft by someone near and dear, or accusations of malfeasance or betrayal by someone who would have no possible reason or motive for such an act, if an act of that sort were even in the realm of being contemplated. But usually the accusation is so outrageous as to be laughable if it weren’t so insulting or potentially dangerous to reputation or livelihood.

 

What happens in general is something like this: (and Dr O has broken it down for me, knowing the neurology of paranoia) my brain generates a feeling, that is the amygdala spontaneously, chemically, spurts out neurotransmitters of some sort that spell “fear” or “threat” coupled with a sense of absolute certainty. I don’t know if there has to be a trigger for this amygdala burst or not, but it seems to me that stress does induce it more often than calm does, and that certain stresses bring it on more often than others. But that is not to say that I can ever predict when or if my amygdala will produce an outburst at any given time; it is definitely unpredictable to the max! So imagine that I am, say, visiting someone in the hospital with another friend, and in that stressful situation — crowded hospital, stress of strange place and sick friend and not knowing what to do — my amygdala pours out the fear neurotransmitter. I’m suddenly on alert and feeling threatened. Someone is attacking me, my brain decides, and he or she is right there in the room with me! In fact, I just heard them both conspire against me, the sick friend and the well friend visiting him…They are both in on it and against me! I hate them both, they got me here on false pretenses and now are plotting against me, they want to hurt me, to do something to me, they…And so it goes.

 

Anyhow, after the primary flood of “threat” feeling (“the feeling is primary” and that feeling is almost always fear in some form or another) the brain’s longer pathway — as I understand it — kicks in and generates an explanation, a storyline to go along with the “threat feeling.” The important thing to know is that the storyline need not make any sense whatsoever. The brain doesn’t give a damn whether there is any evidence outside of it to explain the threat feeling, because the threat feeling is already inside and felt…So anything can explain it, literally anything can seem or feel reasonable, and does. So wherever the mind goes, or tends to go at that moment, will be the form of the storyline that explains the threat-feeling. If one’s brain travels along the line of (I should only be so reasonable) “why do I feel so threatened?  Did they just say something bad about me? Maybe I’d better ASK them! then one is in good shape, because at least then one can check out what is going on, and short circuit any tendency to mistake false perception for reality. But for me, while I do not, often, these days go so far as to opine that cosmic forces are behind my threat-feeling, I do find other less than reasonable sources than reality to explain it: voila paranoia. 

 

One example, when I am in the grocery store, particularly when alone, I almost always hear and as a result know that I am being followed, and instructed as to what I can and cannot buy. I generally race through the store in an effort to get out, and get away from my pursuers,  or if I do not, suffer from dreadful fear of imminent assault or at least dire consequences. At a minimum, in the best of times, I know that someone is following me and keeping track of what I put in my cart, and will be transmitting the “evidence” to a central authority, which will lead to later consequences that I will regret (which my mind spins into longer more detailed scenarios that change each time I am in the store but which vanish as soon as I am safely back in the car or walking down the hill a distance away…)

 

So that is both an explanation of how paranoia arises — from Dr O’s mantra, “the feeling is primary” , meaning the fear that is initially and instantly generated from that burst of neurotransmitters or neuroelectricity to the brain’s subsequent confabulation of a narrative, an explanation for that all-compassing feeling of threat and the certainty that the threat is real. And I hope I have given some examples of paranoia, specific examples, where the situation stimulates the content without the two being necessarily significant or significantly related. For example, in the instance of the two friends at the hospital, it is the fear and the feeling of threat and certainty that provides the stimulus for the paranoia, rather than any underlying distrust of the friends. The friends are simply the carriers of the fear and the certainty of the reality of the threat, which would have been borne by almost anyone stepping into the picture at that time…

Papier Mache Artwork

I thought I got her eyes down particularly well...
I thought I got her eyes down particularly well...

Child SculptureIguess I don’t have to say too much about these photos since they pretty much say it all. The Child is papier mache painted with metallic acrylic paints. I made her clothes out of poster paper and paper toweling and her hair from tissue paper, the rest of her skin is mostly a layer of  heavy duty newsprint or packing paper.

 

We are having an art show in my building in March so I am trying to finish a few projects in order to be ready for it. Alas, the Child is taking up so much time that I dunno that I will have finished much else besides by March…since I needs must also review the galleys of my book of poems and write several articles and perform any number of other necesary duties. Here are two other small sculptures I have made that I could add to the show:

 

 

Crazy Fruit Bowl with Mini-Melon
Crazy Fruit Bowl with Mini-Melon

MuuMuu Mama

Vision Therapy, Stereopsis and Seeing At Night

I gave up driving at night many years ago — I simply could not see properly, and it seemed to me that I often saw things that were not there, or mistook vague shadows for the wrong objects, which was unnerving at best and dangerous in more than one instance. As time passed, I simply designed my life around this lack of night vision and planned to be in before sunset unless I had someone else do the driving. It never occurred to me to ask a doctor what might be wrong with my eyes. Nor did any doctor ever inquire as to why I could not drive at night, even when I said as much…It seemed to be simply accepted and acceptable to all, that I, starting at age 35 or so, should be unable to see well enough to drive when it was dark. Perhaps because I was already disabled and unable to work this seemed relatively unimportant to them, perhaps because I was a psychiatric patient it seemed to them somehow “reasonable” or understandable…Or perhaps because I myself showed no particular distress, only acceptance. But this was later not the case, and yet still the MD eye doctors remained aloof and uninterested, dismissive, as indeed my ophthalmologist largely was about my double vision when he couldn’t solve it immediately. It was only when I spoke to my optometrist friend, L, that I felt taken seriously. Not only did she immediately tell me to come see her in the office, that we would get to the bottom of the problem, but once we did, she put prisms in my glasses then encouraged me to see Dr D for vision therapy, knowing how important the chance of regaining stereo vision was to me.

 

Be that as it may, as to my lack of night vision I gave up a great deal because of it. I used to be a folkdancer and for many years it was a passion of mine, but when I grew unable to drive at night I had to give it up. I stopped visiting anyone after dark if I couldn’t walk there and back and I did not even go to the movies or grocery shopping, except when the drive was extremely well lit and I was willing to take a chance.

 

Now let me jump ahead to vision therapy. After my eyes “clicked” into place that afternoon/evening and even more in the days that followed I began noticing details and even whole objects that I had not seen before. It seemed that because my eyes had not before resolved certain details, like the boundaries between a near object and the background, which (and I know this sounds weird) had always been just a jumble and confusion of lines, not a crisp boundary, they simply ignored them. What that boundary defined simply disappeared for me. So, for example, if I were looking at a group of objects against a complicated background, the background and the foreground would simply mesh and much of the “picture” would be lost to my sight, to my understanding. A  collection of plants sitting in front of a  messy bookshelf might defeat any attempt to resolve it into more than a mass of greenery and generic books. I would not have been able to separate the plants into distinct leaves on distinct plants nor distinguish one book behind all the greenery from another. The meshing of lines and confusion of background and foreground would have made it all impossible.

 

THis is very difficult to explain to anyone who has not had this experience. Indeed, I cannot recapture it for myself, now that I have stereo vision; I can only remember what I saw when I did not have it. Imagine you are looking through an aquarium window and you see dozens of fish snoozing in perfect rows. You can see the rows and sight down them, 12 fish deep, counting each fish and see that there is space between each fish. But without stereopsis there is no space, and the consequence of that is tremendous: Without palpable space, there can be no perceived division, no distinction between the fish either, so that you actually cannot tell how many other fish are there, nor count them precisely. You might know, somehow, vaguely, that there is a “mass” of fish, but to say exactly 12 would be impossible, unconceivable to you without stereopsis. In point of fact, you’d have trouble resolving the fish into anything but a vague notion of  a “mess o’ fish.” At best they merely overlap like sheets of paper, rather than sitting each in its own three dimensional pocket. At worst, you can’t tell anything more than that there are a bunch of fish in there. And I’d be hardpressed to say which was indeed worse.

 

So, once I had stereo vision, I finally noticed, in the sense that I literally could see the plant leaves, the fish and other things I hadn’t seen before. Another newfound aspect of vision was that the foreground became sharp when I focused on it, but the background blurred. I had heard about this phenomenon, but had never seen it before, wondered what people were talking about all my life. When “laser photos” were first shown at an exhibit on the New Haven Green in the early or mid  1970s, everyone was oohing and ahhing over the crispness, the lack of blurring of the background, how everything in foreground and background was so detailed…But I remember thinking, What is the big deal? I see that all the time. And I didn’t understand at all what they meant by blurring of the background compared to the foreground…It was all mumbo jumbo to me. Of course, since I didn’t understand, I simply remained mum about it. I figured, okay, maybe I didn’t get it, maybe I was too science-stupid to understand. I was in fact either an A student just out of high school science or a pre-med post-college student, but since I couldn’t figure it out, I simply chalked it up to my lack of intelligence and moved on. Had I understood the implications both of what I did and did not see, I might have happened upon the problem earlier in my life. (THough likely not a solution, since they were telling people at the time that stereopsis could never be regained in adulthood.

 

So, here I am, Jan 2009, newly stereoscopic, able to resolve details I could not before, seeing more of the world and even able to notice that the background blurs when you focus on the foreground, and I decide, maybe I’ll try to drive in the dark…just once. I don’t know why I thought it might be different, but I had the sneaking suspicion that I might resolve the darkness differently too.

 

I started up the car and waited for the lights to turn themselves on (so I wouldn’t forget to turn them off). Then with a little trepidation, I pulled slowly out of the well-lit parking lot. Immediately, I could tell the difference. For one thing the whole world seemed better lit now. I could see, well, details where before there had been only darkness, and confusing chiaroscuro. Streetlights defined things, rather than merely casting shadows onto them, and assisted my vision rather than merely making matters worse. I could see into bushes, could see branches and inside the hollows. Dark recesses, doorways became just that: recesses, doorways, and not just patches of darkness, black blurs to stump and confuse me. My sole difficulty lay with the headlamps of approaching cars — these as always tended to unnerve and “blind me.” I found however that if I concentrated on the road and the side of the road, I could see right through them, that they did not in fact blind me at all.

 

 I once was blind to much of my environment and didn’t even know it. I thought at the time I started seeing Dr D that all I wanted was to recapture the experience of beauty I’d gotten a glimpse of when mesmerized by tree bark — the reason I embarked on Vision Therapy (no pun intended). I never dreamed that I would gain so much more vision and so much more functioning in my life in the process.

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…

Vision Therapy: Seeing Inside the Snow

I stood inside the snow yesterday evening for the first time in memory. I stood inside the snow. Does that seem like a strange statement? Yes, I have been out in the snow before, though god knows it hasn’t snowed in southern New England much these past years so last night’s storm of whitefall was really something to behold. I was holding my breath at 2pm yesterday, because the forecast had predicted heavy snow starting by 11am and it still was only cloudy by mid-afternoon. Then a half hour later, I looked up from my computer, and lo the sky was white with skirling snow coming down so furiously you could barely see the horizon. Thrilled, though still convinced it would switch to rain mid-way through, I pulled on all the warm clothing I could find, plus two pairs of socks and a thick pair of clogs, mittens and my warmest coat: I meant to go outside in that weather. Danged if I was going to be anything but warm!

Well, I didn’t need to go very far from the door. No one else was in sight except for one elderly gentleman sitting inside the lobby near the Christmas tree, and someone already shoveling snow from the walkway. Neither paid me any mind, which was good because I was not there for attention. Actually, in a sense it was for attention, it was to pay attention to the snow, to really see it, that I had bundled up and gone out there. I thought there would be some need for effort or some, I dunno, some before, before I could see it, but in fact I was inside the snow, within the different levels, layers, depths of it before I knew it. I did know it, though. It was immediately and stunningly obvious to me that this was something I had “never” seen before, or not in any retrievable memory. What I remembered was that always before snow had fallen in a kind of whitish mass, a jumble of flakes more or less undistinguished from one another, because indisitnguishable from one another. I can’t emphasize this enough, how if you cannot perceive depth, you lose detail and even the ability to perceive certain structures because of it.

For instance, I now can easily see certain aspects of my palm plant that before were literally invisible to me, because I could not distinguish one leaf from another…and therefore could not see the details that defined these aspects. Just so the snow. Now, it is so clear to me that many many flakes were falling, and what size they were and even what texture they had. But I know that last year I might have had to guess as to all that, or judge it purely on the basis of the feel of flakes falling on my bare skin. Seeing the mass of white flakes falling would not have given me any more accurate information than that it was snowing a great deal. How many flakes fell per foot, or how big the flakes and what kind, I would have had no way of telling.

Yesterday all that changed. I saw that I was actually inside snow, not looking at a curtain of snow, but within an ocean of it, with snow all around me in every direction for many miles. It might sound strange, but the very act of looking through the spaces between the flakes, the sort of weird tunnels that space made as the flakes fell, was extraordinarily beautiful. It is not something I think that most people see, or perhaps can see, having gotten too used to stereopsis (depth perception) or never having lost it. If there were some way for me to lend others this experience, or have them learn to see it from my persepctive, I would share it, as the world is astonishingly beautiful, and everyone should have the opportunity to perceive it, though without having to lose stereopsis to do so. I suppose that is what the various 3-D movies and anaglysh photos of fantasy scenes offer (to view anaglyph pictures you utilize red/green or red/blue lenses for the 3-D experience). One goes to a 3-D sci-fi movie to be wow’ed by the special effects that are so stunning, and there one appreciates the beauty of that “world” — but does it rub off onto an appreciation of the beauty of this one? Alas, I doubt it. I doubt that viewers of the movie understand that this world is as 3-D as the movie is, and that what they see in the world is as wonderful as what is in the movie. No, this world is simply too prosaic to be seen. It truly is a matter of seeing with new eyes. Which is what I have. As I told Dr D, she changed my life with her Vision Therapy, and I couldn’t be more grateful.

Schizophrenia and Trust

Today I want to discuss the issue of trust, a specific kind of trust in my case, which is intimately tied to my sense of personal evil and a resultant paranoia that persists to this day. (Note: while I discuss this in the context of schizophrenia, the etiology of my schizophrenic symptoms remains Lyme disease.) Because I am evil, I must assume that people are out to get me, to kill me, to get rid of me by any and all means. This is a logical conclusion even as it leads me to a state of more or less constant fear and suspicion. I worry about where the next attack is going to emanate from. This puts me in a difficult position with most people, who do not like to contemplate the fact that I do not trust them. I must reassure each and every one that they are the exception to the rule, when by and large no one truly is, because I assume that everyone in their heart of hearts despises me! Deep down, deep down, no one really feels for me anything but the purest antipathy and revulsion, and perhaps unconscious to them even, wishes me ill (at a minimum) or like my twin, wants me dead.

That said, I am able to put this awareness aside and deal with people on the as if level, as if they were not my enemies, as if they did not wish me mortal ill, as if I were not somehow a source of scorn and disgust to them. I am aware of it nonetheless, and aware of the double entendres being exchanged, or being sent one way to me. But I do not allow any expression of comprehension to show on my face. That would be breaking the compact of civility. No, I pretend that I didnt “get it” and act insensible to everything but what is said on the surface. but I do get it, and I know what is really being said in the subtext…

Sessions with Dr O are an island of relief for me in all this. I don’t know why talk therapy is so frowned upon for people with schizophrenia. It has been nothing but a blessing for me, despite the many bad experiences I have had with certain incompetent shrinks over the years. Dr O has taught me so much about my symptoms, how to recognize them, what they are and how to handle them, both emotionally and intellectually, how to wrestle them and overcome them, that I cannot but be grateful…And I would never want to have gone the “meds only” route all this time. No, I think that is a terrible mishandling of schizophrenia, and deprives most people with the illness of what might have helped them recover to the best level possible.

But one thing about trust and Dr O is that I need to trust her to take care of herself vis a vis me. I need to know that she will not let me burden her or wear her down. For example, and this is really painful to report, two years ago when I was in the hospital with what turned out to be relapsing CNS Lyme disease, I must have seemed impossible to deal with. I was out of control, on one-to-one almost the entire 4 weeks I was there. I attempted suicide, refused half my medications an hour after agreeing to take all of them…BUT still I knew that when she said she would see me even during her August vacation that it was a poor decision, and I did not want her to do it. I just didn’t know how to tell her, nor if anyone would see me in her place. Well, she made some rotten decisions and got furious with me over things that she ordinarily would have handled better and differently…and finally, to my great relief, took her vacation and got another doc to see me in her stead. But I felt terrible, because she left abruptly and in anger, and it needn’t have happened in the first place if she had taken care of herself and gone on vacation the way any other doctor would have. So I spent the next week and a half in her absence thinking I would not continue to see her. I was too dangerous to her. Because I had not taken proper care to NOT be “too much” even for her…so it was time to leave.

Finally, I was discharged by my demand, no longer committed on the 14 day paper I’d been signed in on in the middle of my stay, not wanting to be still there when she got back. I’d see her in 6 days and for 6 days I deliberated whether or not I would return or find someone new. It wasn’t rancor on my part at all, it was purely fear that I could so misjudge a situation and my effect on things that I’d accidentally allowed myself to over-burden someone before walking away, before saying, Never mind, I’m okay, relieving them of any responsibility or worries. I hadn’t meant to. I hadn’t meant anything by refusing the meds except that I’d wanted to take only one pill of each category, not two or three of each category, and I figured that if I did so while she was away on a long weekend, and was fine when she returned, then I’d have proved it was okay to do so. My memory is SO bad that I simply did not remember that just an hour before that I had agreed to take ALL the meds, including 3 Haldol. This sort of crazy lapse happens to me all the time. The memory simply wasn’t there to hold onto.

In any event, much as I wish it didn’t, that incident haunts me even now. I want to talk about it with Dr O but am afraid to bring it up lest she get angry all over again or refuse to hear my side. And besides, it is not the incident itself that bothers me so much as the fact that I did not protect her from me! I did not protect her from me! And so she was harmed by me, worn out, wearied to the point of exhaustion. True also is that fact that I worry as well that I cannot trust her to protect herself from me! And if she can’t or won’t, and I must, then there’s no point in my seeing her. The only way I can protect anyone is by getting out of the way. Only if I know that someone will protect themselves, take care of themselves vis a vis me and not do things in any special way for me, can I trust them to help me. Otherwise, it always backfires to my detriment.

Symptoms and Progress

I am working on a longer blog entry but it is taking a while, so in the meantime I will get you up to speed on a few other matters: my symptoms, of Lyme, of schizophrenia have mostly subsided, all except the startling, which continues on a reduced level. I don’t startle at bright lights anymore, nor at people coming at me around corners in Stop and Shop, but I regularly shriek in a startle reflex when I am waiting for someone and they knock on the door. It is predictable that I will do so, because it is so unpredictable when they will knock. And yet the strangest thing about it is, I am anticpating the knocking, and am waiting for it…so you’d think I would be prepared. But that very anticipation only seems to make the startle that much worse, I don’t know why. When I merely hear the knock out of the “corner of my ear” as it were, the startle is much less, and sometimes I do not startle at all.

But I do know that this was never a problem until I developed Lyme and the lesions in my brain that have never gone away, the “tiny strokes” that could have been normal if I had been over 50 when they occured, and if they had not appeared in a cluster in a matter of one MRI to the next. Meaning that I had an MRI during a psychotic episode and the results were clear, but a number of months later, the scar tissue of these tiny stroke like lesions suddenly appeared, suggesting that something had indeed occured during the time I had been ill. And we believe it was Lyme-on-the-brain.

That said, I am feeling a great deal better, though I hear some music from time to time and occasionally people talking to me, plus the little People when I do art work, naturally, though they do not bother me in the slightest. (The little People, for those who do not know, are the voices that are absolutely benign and merely argue amongst themselves about matters having little to do with me, such as about Russia and independence of the various states, or Born-Again Christianity, or teenage chores etc…It can be very entertaining but never or rarely threatening.

I have been slowly working on a child sculpture and a couple of bowls, though not a slimemold bowl like the one that several people have wanted a copy of. I don’t think I could make another one, frankly, I think I would be bored and uninspired to have to do it again. But if I can, I will make something else in those colors…Meanwhile, I hvae made a mushroom bowl in pastels and a basic watermelon bowl, that is just a bowl painted like a big watermelon, which I would paint over except that I polyurethaned it already. If anyone is interested in either bowl, and I will post pictures below or soon, do let me know!

Joe, Joe is doing well, as well as can be expected. I ought to write a whole entry on him, given that this is a new blog and I may have other new readers, so for now, to my old readers, rest assured that nothing very new is afoot. He is comfortable, relatively, and commmunicating well with the EyeGaze Response Integrative Communication Assistive device (or some such) ERICA. We even talk on the phone for hours now, for hours because it takes that long to have a conversation. Why so long? Well, It takes at least a second or two for him to spell one letter, and probably 6-7 seconds per letter in reality. So if he want to say a long sentence, and that is the easiest way for me to understand him, then it could take a long time for me to wait to hear it.

But it is worthwhile and I generally paint with the speaker phone on, so I can do something while I wait.

Well, now to post the pictures of the bowls:dcp_3632dcp_3631dcp_3629dcp_3627

Watermelon Bowl
Watermelon Bowl

Seeing in Three Dimensions: Vision Therapy

Definition of Optometric Vision Therapy

(from the American Optometric Association)

Optometric Vision Therapy is an individualized treatment regimen prescribed for a patient in order to:

  • Provide medically necessary treatment for diagnosed visual dysfunctions;
  • Prevent the development of visual problems; or
  • Enhance visual performance to meet defined needs of the patient.

Optometric Vision Therapy is appropriate treatment for visual conditions which include, but are not limited to:

  • Strabismic and non-strabismic binocular dysfunctions;
  • Ambylopia;
  • Accommodative dysfunctions;
  • Ocular motor dysfunctions;
  • Visual motor disorders; and
  • Visual perceptual (visual information processing) disorders.

The systematic use of lenses, prisms, filters, occlusion and other appropriate materials, modalities, equipment and procedures is integral to optometric Vision Therapy. The goals of the prescribed treatment regimen are to alleviate the signs and symptoms, achieve desired visual outcomes, meet the patient’s needs and improve the patient’s quality of life.

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Vision Therapy, it turns out, is regarded with skepticism by some vision professionals — ophthalmologists in particular I suspect,  who consider it ineffective at best and a sham at worst. VT got a bad reputation from its unfortunate association with The Bates Method, a therapy reputed to rid patients of the need for glasses by means of eye exercises and little else. So far as I know, this Method was not very effective, despite the claims. Vision Therapy as defined above, on the other hand, can be. Is, in my case. But more on that later. First, let me tell you a little more about it.

First of all, after I had the prisms put into my corrected lenses, I went to see Dr D, the Vision Therapy optometrist, who did another exhaustive exam. When she had ruled out everything but what she called intermittent exophoria (“nearly constant in your case”) she recommended vision therapy, which I agreed to try for 2-3 months of once a week sessions, then re-evaluate at that time. Therapy, I soon discovered, involved using special glasses, polarized and red/green lenses to look at specialized pictures, and exercises meant to strengthen my ability to converge my eyes, something that was essential to my learning to see in stereo and which even my ophthalmologist grudgingly granted might help me. There were other exercises I did, using blocks and my fingers, trying to train my brain in a different way. At first, simple things like keeping my eyes on a pencil as I brought it towards my nose (the trick was to use red and green glasses and keep the pencil in sight of both colors and a single, not doubled image) were beyond my powers. But gradually I found I could not only do that with ease, but could even make a face magically appear between two other faces drawn on a piece of paper. Then I could converge my eyes in such a way as to have it appear in 3-D and be able to look at this from different angles.

Yet I failed most of the time to perceive the real world in 3-D, in stereo. I knew this because I knew precisely when I did see 3D, knew from the sheer beauty of whatever I looked at that I was using stereovision. I had learned that if I had to ask myself, Am I seeing with stereopsis, then almost by definition, I was not. it was clear to me that I knew immediately and without questioning when I was.  I could also tell the difference, if I wanted to, by testing myself on the palm tree in my apartment. I knew from past experience that when I saw it properly, each leaf stood out in relief, in its own plane and that I could pick each spear out,  pick each one up separately. But when I could not see in 3-D the leaves became jumbled in green, a mess of intersecting lines and overlapping “things” I could not quite distinguish even as leaves.

I was so discouraged by this — not once all the week before had stereopsis come upon me spontaneously, and even when I worked on using it, it had a forced quality that made depth perception tenuous at best — I was so discouraged that yesterday I decided to give up and not do it any longer, or at least to re-evaluate where I was and where I wanted to go. Though I knew I was not actually seeing in stereo ordinarily, despite my success on tests, Dr D suggested that perhaps I saw more depth than I knew, and that the effect was more subtle once one got used to it…that the shocking beauty of it faded once it became a common occurence in one’s life. Fearing that what I was seeing was indeed 3-D somehow, and that the magic was indeed already lost, I told her that I had to take some time off to decide if I wanted to continue VT. At the very least I needed to define my goals in continuing. I left, feeling empty and deflated, certain that both my time and my money had been largely wasted…

Then, voila, as if all I needed was a few days of good sleep, today “it” appeared, stereopsis and the magic late this afternoon. Then again this evening. Even as I am writing this, I have a bowl of yogurt next to me, and the very lumps of it look so exquisitely bumpy, defined by the space that surrounds them, that I cannot bear to disturb them by eating, except that taking a bite changes the configuration and thereby brings new bumps into view! If I turn, I can see Dr John Jumoke, my sculpture, standing next to my chair, and he looks completely different in 3D. His hand in space, reaching out, has a surreal, magnificence – words literally fail me in trying to describe this –  the curves of his fingers, the drape of his shirt… all leave me speechless at their beauty.
The extension of any hand or a palm leaf in space is a marvel …indescribable at best, since I am aware that this must seem at best silly to most of you who have had stereo vision since birth, and incomprehensible to those of you who lack it now…The way I can best say it is perhaps what I wrote to a friend last night when drunk with Xyrem and sleep: “one of the gifts of this double vision problem has paradoxically been that learning I didn’t have 3d vision meant I could discover what 3D vision was like, newly acquired. And the world in 3d is gorgeous, magnificent, purely lovely…But no one else understands just how much so, because they do not see this loveliness…”

Later on, I wrote this to Joe (the dear friend paralyzed with ALS with whom my old readers are so familiar): “I saw my entire room in 3-D all evening and part of the afternoon today. This, despite my switching to glasses that do not have prisms in them, which means I have learned how to converge my eyes quite successfully. Partly that is good, but partly it worries me because I do not want stereopsis — that is seeing 3D– to become old hat and something I don’t notice anymore. If it loses its magic, I will be disappointed. I want 3-D to  stay special to me, to remain lovely and a thing of magnificence, so that I remain aware of it. I don’t want it to be humdrum and ordinary the way it is for most people. That for me would be very sad. Part of what is so beautiful about it is its very rarity in my life…

On the other hand, I do not want NOT to see in 3D most of the time just because I am afraid it will become ordinary…Or do I? Perhaps I am indeed willing to sacrifice a life of 3-D for those special times when a moment of 3-D comes upon me unaware and wakes me up with its splendor! I would hate to never experience that ever again, which could happen if 3-D were an everyday experience instead.

Oh, I do not know what to do! In fact, I cancelled my next vision therapy session because of this indecision. I didn’t know if I wanted to continue to learn to see 3D  or to stop learning  more than what I already know…and even to let some of it fall away into forgetfulness again. Dr D seemed to understand my dilemma as she agreed to the cancellation, appreciating how important it was to me that 3D remain beautiful…And it is spectacularly beautiful right now. I cannot convey it fully, as you know, except to say that space is not “negative” the way art critics speak of it, no, space loves the world into being, it caresses every object and person and cups and bears and holds them in its infinite arms, space is the roundness that makes things real, the thing – and it is a thing, – that gives all matter its matter of factness, its density and heft. It is magic, and it is magnificent beyond words…

If this has not convinced you of anything, I recommend an article by Oliver Sacks called “Stereo Sue”  (June 19, 2006, New Yorker) about the phenomenon of stereopsis, its loss and the regaining of it in adulthood. In it he describes the experience and the wonder of it better than I have.

On Vision Therapy and Stereopsis, and an Honorable Mention to Boot!

I just received word that a third poem won an honorable mention at New Millennium Writings. The first two will be in the volume just now to arrive in my mail box this week. The latest one will be published sometime next spring. Old readers may be familiar with all three, but since they will be in my book, We Mad Climb Shaky Ladders, and have all been published on-line before, I will showcase only one here for now. (One was the “How to Read a Poem: Beginner’s Manual” that I already posted and the other was “The Prayers of the Mathematician” which also won the 2001/2 BBC World Service Radio International Poetry Contest.) Here is the poem that just won the HM — it is not a new one, by any means, but it is one of my longtime favorites. It concerns a friend from high school who committed suicide while in college and I was left to wonder why (along with her sister and her parents).

THREE, FOR THOSE LEFT BEHIND

1. Grieving and Staying

The dead do not need us
to grieve or tear our hair
or keen extravagantly.
Stepping free of flesh
a double exposure (one ghost
rising from bed, another napping
at mid-day), their spirits follow
the curves of their late bodies,
rehearsing again and again
what we’re always too late for.
Just so, my friend Susie,
scrubbed clean of life’s debris,
twenty years later returning
in my dream of the dead
returning and I can’t let go
my guilty retrospection,
the arrogant suspicion
I could have saved her.
Now, though I know no dream
will return her utterly, I cling
to this one: Susie and I at twenty-one
standing before two doors,
how she points me towards the one
where a celebration is taking place
then disappears through the other
marked No Exit, as if it has to be,
as if it’s fair, as if either
of us in this world
has ever had a choice.

2. At the Lake, Under the Moon

In memory, the moon’s always a new dime,
glinting off the dark chop, ticking the night away

ruthless and indifferent as a parking meter.
As always, the lake shimmers, ebony splashed

with silver and we’re sitting there at the end
of the dock, thirteen, dangling our bare feet

above the water’s coruscating skin. We barely
ruffle the surface but it’s enough

to shatter the still shaft of moonglow,
potsherds of mercury, dancing tesserae, a mosaic

of light illuminating the water.
Is it possible we don’t yet suspect

how things must turn out? We shed our clothes
to swim shy and bare-skinned, silvered bubbles

rising to the surface like stars
of the wayward constellations

by which we’ll navigate our separate lives.
What we know is this: the sleek water

rolling off our skin, the frangible sand, schools of
glowing nightfish nosing amid algae.

We can’t guess how fate will interpose
its coups and tragedies, how far in ten years

we will have traveled from that night.
I never got to say good-bye.

I scatter your white ashes,
moonlight over dark water.

3. In My Dreams You Are Not Silent

Time heals nothing
but the space left behind
is filled, little by little,
with the critical minutiae
that make a life: shirts
at the cleaners, supper
in its pots, a half-read book
overdue at the library,
lying open, face down,
on the table.

____________________________________________________________

I went to vision therapy today, something I have undertaken in an effort to learn to experience stereo vision, which is to say depth perception. Once my double vision was resolved, thanks to my optometrist friend, Leora, (and not the ophthalmologist, who basically threw up his hands in frustration and gave up) who found the source of the problem in “convergence insufficiency” and exotropia, or a tendency of my eyes to go outward rather than to converge on an image or object…once that was resolved, I was determined to find a way to learn to perceive depth, something I had not known I lacked until Leora so informed me.

I looked it up on the internet, and spent a long time at sites on “stereoscopy” and 3-D images, which I was unable to see, largely because they required two colored glasses, though I would not at that time have been able to see the images anyway. But it was not until I found the site on Vision Therapy that I learned that children regularly learned to “see 3D” by dint of such methods. But what about adults? What about someone who hadn’t seen depth in who knew how long? Could I learn stereo vision, would vision therapy work for me?

It turned out that Oliver Sacks had written an article just two years ago on the very subject of stereopsis, or the ability to see and perceive depth via binocular vision. Not only that but the article featured a woman dubbed “Stereo Sue” who, in her late 40s started vision therapy after apparently having not had depth perception since infancy, if then, and within two sessions had a breakthrough.

Suddenly,”doorknobs popped out” at her…astonishingly, she began to have stereo vision and depth perception in almost no time at all, even though doctors had always told her it was hopeless. Once a critical period in childhood had passed, they said, it was too late. The brain was fixed and stereopsis could not be learned. Well, she proved them wrong and soon she was standing inside of snowfall, rather than watching it fall on a plane in front of her, swimming with light-giving marine organisms and perceiving them swimming around her.

Reading this made me even more determined to try to find a way to learn stereo vision for myself and I was thrilled to learn that a certified practitioner of Vision Therapy worked in a town just across the bridge from me, an easy drive away, one even I could accomplish with a little practice. So, with Leora’s encouragement, I wrote Dr D an email and eventually gave her a call…and soon I too started this therapy for my eyes…It consisted of eye exercises mostly, various ways of learning to converge my eyes properly on an object or image, to improve my eyes’ tendency to go outward. Dr D taught me how to make them go inward – to converge – so I could keep them under my control even if on their own they would wander outward. That way I could control whether I saw with stereo vision or not.

_____________________________________________

I neglected to write about the experiences that in particular made me most desperate to learn to perceive depth, and that was what happened quite spontaneously while taking a walk one day. WIth my new prisms in my glasses, I happened to be striding around the Green, which is exactly a mile in length and so a good lap for walking, and identifying trees as I walked, when I happened to notice the bark on a particularly old and enormous maple. The bark just glowed, its furrows like brain sulci carved deep, chestnut with a reddish undertone, and the ridges a greyish brown, warty from the effects of weathering. These stood out in such brilliant relief that I was dumbstruck and mesmerized. For the longest time I could not move from where I stood, gazing in wonder. That bark was simply the most beautiful thing I had ever seen in my life. The way space curved around each splinter of exposed cortex and every nubble of weathered bark literally made me shiver with delight. The whole expanse of it shimmered. I could not drag my eyes away. Finally I realized that passers by were staring, wondering why I stood stock still, gazing at the trunk of a tree (probably no one noticed at all, but such is my self-consciousness even at times like that). Fearful of being questioned, I made myself walk away, and the loveliness before my eyes vanished…until I reached the next tree, which likewise grabbed me by the heartstrings and held me tight. What was going on? Why was tree bark suddenly so incredibly attractive, so astonishingly beautiful to me? Then I understood: It was space, I was seeing depth, and space was defining the bark. The loveliness of space gave to bark a brilliant beauty that I think I alone could perceive because I could see space as no one else seemed to.

Indeed, as I described the experience to others later that day and that week, and as I re-experienced it, always with trees and bark (to see each leaf hanging from a tree in its own pocket of air stunned me into laughing with joy, it was that overwhelming and disarming…) I wanted so much for someone to share this with me, but no one seemed to care or understand. Instead, they only got impatient when I stopped to “see” more closely, to look and experience the space around a tree or the grass. I was devastated. I wanted to take a week away from everyone and every obligation, to do nothing but look, and feast my eyes on whatever they beheld. The experience was breath-taking and unlike anything I had ever undergone before in my life. It was also lonely. Only Stereo Sue seemed to have understood and might have appreciated where I was at, so to speak, and she was not anywhere nearby.Not that she was or is far. I believe she is only a state away, within driving distance in fact. But that doesn’t make much difference when you don’t know someone!

Anyhow, it was with that partial ability, and fleeting and unstable experience under my belt, that I went to Dr D as I’ll call her, to see what vision therapy could do for me.

(To be continued tomorrow as I just lost a good part of this and it is now too late for me to continue)

Art and Recovery

Art capital A saved my life. More than that. Art gave me a new life, new hope, and something to get up in the morning for. It’s not that I stopped writing. Clearly that is not the case. But I was writing in a vacuum and needed an outlet for my creative urges that involved more than just my brain. Oh sure, writing involves the hands, too. But not in the way I mean. What I needed was, well, what do I mean? I wanted to make things, create objects or works of art that could be seen and touched and even smelled and if scratched or thrown to the ground, heard. And if I were like van Gogh, I might even try to taste them! In short, I wanted to create something physical, not just an imaginary or remembered world.

I have always needed to work with my hands, making something or doing some sort of craft or artwork, though I gavitated towards the crafty side of arts and crafts, fearing that I could not “do real art”, that I was not the stuff of which true artists are made. (And pray tell, what stuff is that, Pamela?) So even when I – on a whim – dove into sculpture during a manic episode, creating that llama-in-a-day I have spoken of, the result was mostly folk art, which is to say, unsophisticated, rustic, and at best a craft-like work. Sure, I was pretty proud that I’d made a lifesize animal that actually stood up firmly on its own four legs. But with a deli container head (underneath the papier mache) and huge mailing tube body, scarcely concealed, big enough to have once held a large amateur telescope, it didn’t look much like a llama. In fact, the result was not much more than that tube covered with a few layers of paper and glue, and all of it painted red. Nevertheless, I was proud of “Dolly the llama,” though it took me a year after the mania was treated to finish her. Her saddle blanket fooled many into tugging at the finge to see if it was real or not. a trompe-l’oeil — eye fooling — success that pleased me no end.

But a year was much too much time to complete a sculpture, even a life-size llama. I was almost dreading the work by the time I got to applying the last few strokes of paint. I needed more drive than that to do art, but I didn’t seem to be able to sustain the energey or enthusiasm for much of anything. I wasn’t sure how I managed to write the book, even. Then, during my last hospitalization it seems this obstacle was overcome: on Abilify and Geodon I suddenly had both energy and stamina galore. Or perhaps it is simply that the medications enabled a well me to come out, someone who could sustain an artistic effort, even if it was for the very first time. Given a different life I would have been doing this sort of thing all along had I known it was possible, had I had that kind of stamina… But I didn’t think about this, no, for me there was no looking back.

Over the year and a half since then I have created several pieces, large and small, from a large tortoise to a “crazy fruit” bowl. From a large seated man, to a child detachable from her hassock (not quite finished). My female sculpture, the Decorated Betsy, has even won a NAMI national contest on creativity and mental illness. But why tell you about them. I want to see if I can upload a few photos instead here, but you’ll have to bear with me as I try out the “program”. First, I want to upload a picture of that llama, just so you can get a look at my very first attempt. She now resides in my parents’ bay window, a placement that I regard as an honor.

Looks mighty co-o-o-ld out there!
Looks mighty co-o-o-ld out there!

Here is the Dream Tortoise, otherwise known as Yurtle the Turtle, which is about 3 feet in diameter.

What you lookin' at?
What you lookin’ at?

There are two other large scale sculptures, each a person, plus a work in progress, but it is nearing my bedtime and there will be hell to pay if I do not get my 8 hours of essential-to-my-mental-health sleep. So I will stop here and get back to this tomorrow, posting at least two if not more photos of my artwork then.

————–

Aw hell, here are two more, but without comment or caption except to say that the prescription that the man holds in his hand reads: Dr John Jumoke Rx: art, poetry, music. But first the earliest human I have done, the Decorated Betsy (note that half her face is also decorated, and since Jumoke was supposed to be her doc, his face is decorated too. Does this perhaps indicate that perhaps he too is- infected?:

Decorated Betsy: Lifesize Papier Mache
Decorated Betsy: Life-Size papier mache sculpture 2008 January by Pamela Spiro Wagner

And now Dr John Jumoke

Life-size and attached to home-made papier mache chair
Life-size and attached to home-made papier mache chair

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